European Dravet Syndrome Conference 2024

European Dravet Syndrome Conference 2024

When and where: Thursday 14rh and Friday 15th of March 2024 in Madrid

The Dravet Syndrome Foundation Spain organises the European Dravet Syndrome Conference 2024, which will take place on Thursday 14th and Friday 15th of March 2024 in Madrid, Spain, the sunniest capital city in Europe.

After the great success of both the Dravet Syndrome Conference 2023 and the European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2023, we are proud to announce a unified event this year. By merging these two events into a single occasion, we aim to foster even greater collaboration among individuals dedicated to advancing research and understanding of Dravet Syndrome across Europe and all over the world.

We are therefore proud to re-engage this meeting in person, open to all clinicians, researchers, regulators, and professionals from the pharmaceutical industry from all over the world, with the common interest of fighting epilepsy.

During the conference, presentations will include the latest advances and updates in the management and treatment of Dravet syndrome, including both new available drugs and treatments in development. This event will represent a unique opportunity to get up date on Dravet syndrome management, as well as to discuss and exchange ideas in the most collaborative, relaxed and fruitful way possible with international experts and key opinion leaders.

Therefore, the organising committee encourage all stakeholders working in the health and R&D medicine sector to join this conference: policy makers, academics and researchers, pharmaceutical industry and other sectors in healthcare, SMEs and mid-sized enterprises, patient representatives, regulators, representatives of other public-private partnerships and research-funding organisations.

The registration is free of charge, but mandatory for organisational reasons.

The European Dravet Syndrome Conference 2024 will take place at the Official College of Nursing of Madrid (Spain), located in the former factory of the American sewing machine company Singer, an emblematic building of the 20th century.

Breaks and lunch will take place in the Nursing History Museum of the Official College of Nursing in Madrid, which is the only nursing museum in all of Spain, receiving visitors from all over the world.

With the support of:

Official College of Nursing of Madrid

With the scientific endorsement of:

European Reference Network EpiCARE

European Paediatric Neurology Society

 Agenda day 1 – Thursday 14th March 2024

08.30 – 09.00

Welcome & Registration

09.00 – 09.15

Opening statements & Introduction to the program
José Ángel Aibar,  President, Dravet Syndrome Foundation Spain
Representative of the Official College of Nursing of Madrid
Helen Cross, President, International League Against Epilepsy
Lieven Lagae, KU Leuven

09.15 – 09.45

Dravet syndrome perspectives
Chair: Lieven Lagae, KU Leuven

Dravet syndrome by a young neurologist
Ángel Aledo Serrano, Hospital Vithas Madrid La Milagrosa

Dravet syndrome by an experienced neurologist
Helen Cross, UCL Great Ormond Street Institute of Child Health

09.45 – 11.15

The broader impact of Dravet syndrome
Chair: Stéphane Auvin, Robert Debré Hospital

The impact of Dravet syndrome on parents: coping strategies and support networks
Stéphane Auvin, Robert Debré Hospital

What about us? Siblings of children and adults with Dravet syndrome
Sandra Sánchez Bravo, Gonzalo’s sister

Deep phenotyping of non-epileptic phenomena in Dravet syndrome
Álvaro Beltrán Corbellini, Hospital Ruber Internacional

The emerging role of the advanced practice epilepsy nurse
Javier Peña Ceballos, Dublin Beaumont Hospital

11.15 – 11.45

Networking Coffee Break & Poster Session

11.45 – 13.00

Dravet syndrome in adults
Chair: Danielle Andrade, University of Toronto

New insights into the neurobiological mechanisms underlying SUDEP in Dravet syndrome
Franck Kalume, University of Washington

Longevity and mortality in Dravet syndrome animal models: insights from mice
Massimo Mantegazza, CNRS and University Côte d’Azur

Potential factors of longevity and mortality in Dravet syndrome adults
Danielle Andrade, University of Toronto

Clinical experience and recommendations on mortality and SUDEP in adults
Vicente Villanueva, University Hospital La Fe

13.00 – 14.30

Networking Lunch & Poster Session

14.30 – 15.30

What’s coming next in Dravet syndrome? 1/2
Chair: Martin Bohlen, Duke University

Update on the research pipeline for Dravet syndrome
Simona Giorgi, Dravet Syndrome Foundation Spain

The future of clinical trials in rare and complex epilepsies
Rima Nabbout, Hôpital Necker Enfants Malades

Next generation serotonergic drugs for drug-resistant epilepsies
Lieven Lagae, KU Leuven

15.30 – 16.00

Networking Break & Poster Session

16.00 – 17.15

What’s coming next in Dravet syndrome? 2/2
Chair: Simona Giorgi, Dravet Syndrome Foundation Spain

Development and evaluation of adenoviral vectors for preferential expression of SCN1A in GABAergic neurons
Rubén Hernández, CIMA University of Navarra

Clinical update on ETX101 for the treatment of SCN1A+ Dravet syndrome
Maria Candida Vila, Encoded Therapeutics

DS’coverED project: Understanding and modeling the different steps of Dravet syndrome

Maria Ballarà Petitbò, Children’s University Hospital Niño Jesús

The power of AI and machine learning to diagnose, treat and manage rare disease patients
Judith Marin Corral, Savana

17.15 – 18.00

Research Talk Session I
Chair: Moran Rubinstein, University of Tel Aviv

AAV-mediated gene targeting of natural antisense transcript as a novel treatment for Dravet syndrome
Juan Antinao Diaz, University College London (UCL)

Investigating constitutive or late restoration of Nav1.1 in interneurons in a Dravet mouse model
Martina Mainardi, Vita-Salute San Raffaele University

Functional EEG markers for indicating anti-seizure medication efficacy in Dravet Syndrome
Else A. Tolner, Leiden University Medical Centre

18.00

Wrap up day 1
José Ángel Aibar, Dravet Syndrome Foundation Spain

 Agenda day 2 – Friday 15th March 2024

08.30 – 09.00

Welcome & Registration

09.00 – 09.45

Research Workshop I: New therapies: Pros and cons about different approaches

Introduction to the topic
Rubén Hernández, CIMA University of Navarra
Heidrun Potschka, Ludwig-Maximilians-University of Munich

Dynamic group discussion
Everyone

09.45 – 10.15

Research Talk Session II
Chair: Massimo Mantegazza, CNRS and University Côte d’Azur

Dravet syndrome Research kit: open access tools to foster research
Simona Giorgi, Dravet Syndrome Foundation Spain

Negative dominance: A novel Dravet pathomechanism for therapeutic target and patient stratification
Jacqueline Heighway, CNRS and University Côte d’Azur

10.15 – 10.45

Poster Session & Networking Coffee Break

10.45 – 11.45

Research Workshop II: Dravet syndrome patient stratification

Introduction to the topic
Rima Nabbout, Hôpital Necker Enfants Malades

Dynamic group discussion
Everyone

11.45 – 12.30

Expert Panel Discussion: How to successfully manage the challenges of developing advanced therapies for CNS disorders
Chair:  Franck Kalume, University of Washington
Álvaro Abad, Hogan Lovells
Krista Armstrong, Premier Research
Stéphane Auvin, Robert Debré Hospital
Martin Bohlen, Duke University

12.30 – 14.00

Poster Session & Networking Lunch

14.00 – 14.45

Research Talk Session III
Chair: Gaia Colasante, IRCCF Ospendale San Raffaele

Study of the myelination process in a murine model of Dravet Syndrome: Implications of cannabinoids
Álvaro Sierra, Complutense University of Madrid

Thalamic and cortical dysregulation contributes to visual alterations in Dravet syndrome mouse model
Shir Quinn, Tel Aviv University

Preictal dysfunctions and paradoxical Low-Voltage-Fast onset seizures in Dravet syndrome
Massimo Mantegazza, CNRS and University Côte d’Azur

14.45 – 15.00

Best Oral and Best Poster Presentation Awards, close & thank-yous
José Ángel Aibar, Fundación Síndrome de Dravet

With the scientific endorsement of:

European Reference Network EpiCARE

European Paediatric Neurology Society

Book of Abstracts: click here

Ángel Aledo

Ángel Aledo-Serrano
Madrid
Spain

SESSION TITLE: Dravet syndrome by a young neurologist

BIOGRAPHY

Ángel Aledo-Serrano MD, PhD is a neurologist and epileptologist, director of the Vithas Madrid Neuroscience Institute. His main focus of clinical and research work is in the area of neurogenetics, precision medicine and developmental and epileptic encephalopathies, including Dravet syndrome and other sodium channelopathies, MOGHE, CDKL5 deficiency disorder or SYNGAP1 encephalopathy, among others. He is very active in the social and educational aspects of DEEs, with a science dissemination platform in social media (@AledoNeuro).

Helen Cross

Helen Cross
London
United Kingdom

SESSION TITLE: Dravet syndrome by an experienced neurologist

BIOGRAPHY

Professor Helen Cross is The Prince of Wales’s Chair of Childhood Epilepsy, and Director of UCL-Great Ormond Street Institute of Child Health as well as Honorary Consultant in Paediatric Neurology Great Ormond Street Hospital for Children NHS Foundation Trust, London and Young Epilepsy, Lingfield, UK. Her research has been targeted at improving outcomes in early onset epilepsy, specifically in assessing the role of surgery and ketogenic diet. She has held key leadership roles both nationally and internationally. She is currently President of the International League Against Epilepsy 2021-2025, and Clinical Advisor to the National Children’s Epilepsy Surgery Service’ She developed, as Coordinator, the European Reference Network for Rare and Complex Epilepsies (EpiCARE) launched in 2017.

Stéphane Auvin

Stéphane Auvin
Paris
France

SESSION TITLE: The impact of Dravet syndrome on parents: coping strategies and support networks

BIOGRAPHY

Stéphane Auvin is epileptologist and child neurologist. He is Chair of the Pediatric Neurology Department at Robert Debré University Hospital and full professor at Paris-Cité University, France. He directs the epilepsy programme and the centre for rare epilepsies, member of the European Reference Netword Epicare. His clinical and research activities are focused on early onset pediatric epilepsies and epilepsy drug development.

Sandra Sánchez

Sandra Sánchez Bravo
Albacete
Spain

SESSION TITLE: What about us? Siblings of children and adults with Dravet syndrome

BIOGRAPHY

Sandra is a 38-year-old woman who has been living with Dravet syndrome practically all her life. She has only one sibling, Gonzalo, who is 35 years old. In all her memories, her brother and Dravet syndrome were present. The disease marked her childhood, hers and the whole family’s life.

Álvaro Beltrán Corbellini

Álvaro Beltrán Corbellini
Madrid
Spain

SESSION TITLE: Deep phenotyping of non-epileptic phenomena in Dravet syndrome

BIOGRAPHY

Dr. Álvaro Beltrán-Corbellini (MD, MSc, PhD Candidate) works as a neurologist and clinical epileptologist in the Epilepsy Program of Hospital Ruber Internacional in Madrid, Spain. His main activity is focused on epilepsy genetics and developmental and epileptic encephalopathies (co-chair of the Epilepsy Genetics Unit of the Program), although also directed to video-EEG monitoring, neuroimaging, epilepsy surgery and clinical trials. As an active clinical researcher, he is author of several papers on Dravet Syndrome and other areas of epilepsy. He is active in social media platforms with respect to scientific and educational aspects of epilepsy (@EpilepsiaHRuber)

Javier Peña Ceballos

Javier Peña Ceballos
Dublin
Ireland

SESSION TITLE: The emerging role of the advanced practice epilepsy nurse

BIOGRAPHY

Javier Peña-Ceballos, MSc, RANP, is a registered advanced nurse practitioner specialising in epilepsy within the Department of Neurology at Beaumont Hospital in Dublin, Ireland. Before this role, he accumulated clinical and research experience in epilepsy at The National Hospital for Neurology and Neurosurgery, Guy’s and St Thomas’ Hospital, and King’s College London.
As an advanced nurse practitioner, he is involved in several activities within the epilepsy care programme, including rapid access seizure clinics, transition clinics, vagus nerve stimulation clinics, a telephone advice line service, outreach clinics, and providing support in scheduled consultant-led clinics. Additionally, he actively participates in research activities in genetic epilepsies, vagus nerve stimulation, and the real-world effectiveness of antiseizure medications under the supervision of Professor Norman Delanty.
His daily work consists of providing support and expertise to patients, their families, and caregivers throughout the epilepsy care journey, enhancing their quality of life in the community while minimising the need for hospital visits.

Franck Kalume

Franck Kalume
Seattle
United States

SESSION TITLE: New insights into the neurobiological mechanisms underlying SUDEP in Dravet syndrome

BIOGRAPHY

Dr Franck Kalume is an assistant professor in the Departments of Neurological Surgery, Pharmacology and Global Health at the University of Washington. He is also a principal investigator at the Center for Integrative Brain Research (CIBR) at the Seattle Children’s Research Institute.

His research interests focus on understanding the pathophysiological mechanisms of epilepsy and comorbid conditions in refractory genetic epilepsies.

His current projects focus on the use of animal models to elucidate the mechanisms of epilepsy, sleep disturbances and sudden unexpected death in three debilitating and life-threatening forms of epileptic disorders with a distinct genetic aetiology:

  • Dravet syndrome (an epileptic encephalopathy often linked to mutations in the sodium voltage-gated channel gene, SCN1A).
  • Focal cortical dysplasia (a brain malformation disorder recognised as the most common cause of epilepsy in children and linked to mutations in PIK3CA, an element of the PI3K-ATK-mTOR signalling pathway).
  • Leigh syndrome (the most common form of childhood-onset mitochondrial disorder associated with mutations in NDUFS4, a gene encoding a component of mitochondrial protein complex I).
Massimo Mantegazza

Massimo Mantegazza
Nice
France

SESSION TITLE: Longevity and mortality in Dravet syndrome animal models: insights from mice

BIOGRAPHY

Dr Mantegazza is an expert in the study of physiology, toxicology and pharmacology of ion channels and pathophysiology of neuronal excitability. He has a broad background of in vitro/in vivo electrophysiology, molecular/cell biology, microscopy and behavioral tests in mice, and has contributed to develop and study mouse and in vitro models of epilepsy, migraine and neurodevelopmental diseases, identifying specific defects in the function of specific subtypes of neurons and their consequences on network excitability and phenotype. Dr Mantegazza has studied functions and dysfunctions of ionic currents, neuronal excitability and synaptic transmission. In particular, he has disclosed gain-of-function and loss-of-function effects of genetic variants of SCN1A/Nav1.1 sodium channel, correlating them to specific phenotypes (different epilepsies and migraine) and disclosing specific mechanisms of hyperexcitability in neuronal networks. Dr Mantegazza has supervised 12 PhD students, 13 postdocs and 13 master students, and has been regularly funded in the last 20 years.

Danielle Andrade

Danielle Andrade
Toronto
Canada

SESSION TITLE: Potential factors of longevity and mortality in Dravet syndrome adults

BIOGRAPHY

Dr Andrade is a Professor of Medicine (Neurology) at University of Toronto and the Medical Director of the Epilepsy Program of University Health Network, University of Toronto. She is also the Director of the Adult Genetic Epilepsy (AGE) Program at University of Toronto, a pioneer program established to promote care and research in adult genetic epilepsies. She is also the former Chair and now Co-Chair of the ILAE Task Force on Child to Adulthood Transition.

Dr Andrade’s research interests are the field of transition of care from paediatric to adult and on the area of genetic epilepsies and their natural histories. Dr Andrade and her team have identified and characterized several epilepsies and comorbidities in adults with genetic epilepsies, including Dravet syndrome. She has also identified the first gene associated with SUDEP (sudden, unexpected death in epilepsy) in patients with non-syndromic epilepsy. Her team has also discovered genes responsible for Lennox-Gastaut syndrome, Jeavon’s syndrome, teenage-onset neuronal ceroid lipofuccinosis progressive myoclonus epilepsy, among others.

Vicente Villanueva

Vicente Villanueva
Valencia
Spain

SESSION TITLE: Clinical experience and recommendations on mortality and SUDEP in adults

BIOGRAPHY

Dr Vicente Villanueva is a neurologist at the Neurology Department of the Hospital Universitario y Politécnico La Fe in Valencia, where he has been working since 2004. Since 2005 he also works at the Multidisciplinary Epilepsy Unit of the Hospital Universitario y Politécnico La Fe, where he is Head of the Refractory Epilepsy Unit and of the Epilepsy Surgery Programme. He is a representative of the European Reference Network EpiCARE and a member of the Intellectual Disability Working Group of the International League Against Epilepsy. He has been Associate Professor of Neurology at the University of Valencia from 2017 to 2023 and is professor of the Master in Neuroscience at the same University, directing several PhD theses.

Dr Villanueva trained at the Fundación Jiménez Díaz, Madrid, Spain; the Epilepsy Center of the University of Alabama, Birmingham, AL, USA; the Epilepsy Center of New York University, New York, USA; and the Saint-Vincent de Paul Hospital, Paris, France.

He received his PhD in video-electroencephalography (EEG) evaluation in refractory epilepsy, and is certified in epileptology by the European Academy of Epilepsy. His current research interests include refractory epilepsy, video-EEG monitoring, epilepsy clinical trials and epilepsy surgery.

Dr Villanueva is a member of the EEG Board and the Epilepsy Guidelines Board of the Spanish Society of Neurology. He is a reviewer for the journals Neurology, Epilepsia, Epilepsy and Behaviour, Epilepsy Research, Acta Neurologica Scandinavica, European Journal of Paediatric Neurology, etc. In recent years Dr Villanueva has conducted nine courses on epilepsy, authored 130 articles on epilepsy and edited three books on epilepsy. Dr Villanueva was awarded in 2014 with the Epilepsy Scientific Award of the Spanish Society of Neurology.

Martin Bohlen

Martin Bohlen
Durham
United States

SESSION TITLE: What’s coming next in Dravet syndrome?

BIOGRAPHY

In 2016, Dr Bohlen received his PhD in neuroscience from the University of Mississippi Medical Center. His specialised training revolved around the use of neuroanatomical techniques to dissect brainstem circuits that influence gaze control in primates, cats and rodents.

Following his PhD, Dr Bohlen channelled his deep understanding of neuroanatomical connections in the primate brain to evaluate viral vectors, analysing their efficacy in targeting and initiating gene expression in the non-human primate brain. A key conclusion of his studies is that current viral constructs are not suitable for transgene delivery in the primate brain. Driven by this insight, Dr Bohlen is on a mission to perfect these viral vectors specifically for primates. He envisions a new generation of primate-adapted viral constructs with increased clinical applicability and potency.

Dr Bohlen now contributes to the field as a research scientist at Duke University in Durham, North Carolina.

Simona Giorgi

Simona Giorgi
Elche
Spain

SESSION TITLE: Update on the research pipeline for Dravet syndrome

BIOGRAPHY

Graduated with honours in Quality Control of Health Products and Master in Pharmaceutical Biotechnologies at the University of Bologna. Simona has worked as a pre-doctoral researcher in neuroscience.

During her time at UMH-IDiBE, Simona has led research projects focused on the development of an innovative in vitro model of human sensory neurons. This model is based on the generation of neurons from human fibroblasts using lentiviral vectors and small molecules. She has also achieved a significant breakthrough by establishing a compartmentalised culture of neurons, allowing the differential analysis of the periphery and the cell body of neurons.

Simona also enriched her expertise through a stay at Semmelweis University in Budapest, where she investigated an in vitro model of human neurons. Throughout her career, she has been an active collaborator in several basic and translational research projects, focusing on the study of sensory neurons and ion channels. Her results have been successfully published in high impact journals.

Rima Nabbout

Rima Nabbout
Paris
France

SESSION TITLE: The future of clinical trials in rare and complex epilepsies

BIOGRAPHY

Professor of Pediatric Neurology University Paris Cité, Paris, France

Rima Nabbout, MD, PhD, is professor of paediatric neurology at Université Paris cité and director of the French Reference Centre for Rare Epilepsies at Necker-Enfants Malades, Paris, France.

She is member of EJP-RD (European Joint Programme on Rare Diseases), leading the WP20 on innovation in clinical trials in RD; of ERN (European Reference Networks) EpiCARE steering committee and research council and of IRDiRC (International Rare Diseases Research Consortium).. She is president of the scientific committee of the BNDMR (Banque Nationale de Données Maladies Rares), coordinator of the task force on transition of the International League Against Epilepsy, and core member of 2 task forces on nosology and Big Data.

Professor Nabbout’s research at Institut Imagine (Director of the chair of Epilepsy and leading the epilepsy program at INSERM U1163, Translational Research for Neurological Diseases) is focused on childhood rare epilepsies, aiming to syndromes’ delineation, deep phenotyping, defining disease impact and underlying mechanisms. She is principal investigator in clinical trials on rare epilepsies with development of patient-centred end-points and innovative methodologies for personalized therapies. She has authored more than 300 peer-reviewed papers and received Horizons 2020, FP7, national grants, and philanthropic funds, mainly from FAMA Swiss funds.

Lieven Lagae

Lieven Lagae
Leuven
Belgium

SESSION TITLE: Next generation serotonergic drugs for drug-resistant epilepsies

BIOGRAPHY

Lieven Lagae is Full Professor and Head of Paediatric Neurology Department at the University Hospitals of Leuven, Belgium. He has a particular clinical and scientific interest in childhood epilepsy and is involved in many research projects including zebrafish epilepsy models, brain stimulation, preventive treatment in TSC, the use of fenfluramine and analogues in Dravet and refractory epilepsy syndromes.

Lieven Lagae is the past President of the European Paediatric Neurology Society (EPNS) and he is one of the Directors of the European Brain Foundation and Member of the Steering Committee of EpiCARE, the European Reference Network for rare and complex epilepsies. He serves at several scientific journal editorial boards and pharma company advisory boards.

He received the ‘Cures within Reach Patient Impact Clinical Award’ in 2017, the 2019 Honorary Award of German speaking Paediatric Neurology Society and the 2019 Aicardi Award of the EPNS.

Maria Candida Vila

Maria Candida Vila
San Francisco
United States

SESSION TITLE: Clinical update on ETX101 for the treatment of SCN1A+ Dravet syndrome

BIOGRAPHY

Dr. Maria Candida Vila has over a decade of experience in the medical and scientific arenas. She is currently Director of Medical Affairs at Encoded Therapeutics, where she plays a key role in advancing gene regulation therapies for pediatric CNS disorders, including Dravet syndrome.

Since joining the company in April 2020, Dr. Vila has leveraged her expertise to enhance cross-functional collaboration, supporting both research and clinical development as well as patient and medical engagement efforts. Her professional journey includes Audentes Therapeutics, Cytokinetics, Children’s National Health System, and The Scienomics Group, a Healthcare Consultancy Group Company. Dr. Vila earned her Ph.D. in Immunology and Microbiology from The George Washington University (2012-2016), after completing her Master of Science degree in Public Health/Microbiology from the same institution (2009-2012). Dr. Vila also holds a Doctor of Pharmacy (PharmD) degree from the University de São Paulo, Brazil (2003-2007). Committed to advancing gene therapies for rare diseases, Dr. Vila collaboratively focuses on improving patient outcomes in the biomedical field.

Rubén Hernández

Rubén Hernández
Pamplona
Spain

SESSION TITLE: Development and evaluation of adenoviral vectors for preferential expression of SCN1A in GABAergic neurons

BIOGRAPHY

Ruben Hernandez-Alcoceba graduated in Medicine (1994) and obtained his PhD (1998) in Spain. His post-doctoral training was in the field of oncolytic adenoviruses in the Cancer Center of the University of Michigan (Ann Arbor, MI, USA, 1998-2002). In 2003 he obtained a researcher position in the Center for Applied Medical Research (University of Navarra, Pamplona, Spain). Since then he has designed and evaluated adenoviral vectors for cancer immunotherapy, as well as adenoviral and AAV vectors for the treatment of genetic diseases such as Wilson´s disease, cerebrotendinous xanthomatosis and Dravet syndrome. His team has pioneered gene supplementation approaches for the treatment of Dravet syndrome.

Maria Ballarà Petitbò
Madrid
Spain

SESSION TITLE: DS’coverED project: Understanding and modeling the different steps of Dravet syndrome

BIOGRAPHY

Maria Ballarà Petitbò MD, is a pediatric neurologist currently working at the Hospital Universitario Infantil Niño Jesús in Madrid. Her daily clinical practice is mostly based on the care of children with developmental and epileptic encephalopathies, as well as refractory epilepsies of other multiple etiologies. In the research area, her work is mainly focused on the study of autoimmune-associated epilepsies and the development of biomarkers and new therapeutic options for these diseases. She also participates in various clinical trials investigating the use of targeted therapies for epileptic encephalopathies such as Tuberous Sclerosis Complex or Lennox-Gastaut syndrome, among others.

Judith Marín Corral

Judith Marín Corral
Madrid
Spain

SESSION TITLE: The power of AI and machine learning to diagnose, treat and manage rare disease patients

BIOGRAPHY

As an intensive care physician with 12 years of experience in healthcare, her journey has been deeply intertwined with both clinical practice and research. Her passion for medical exploration ignited during her medical school years when she was awarded a scholarship, leading to the completion of her doctoral thesis on muscle dysfunction in patients with COPD. Following this academic pursuit, she embarked on her residency at Joan XXIII Hospital in Tarragona, where she honed her skills in clinical data management.

Transitioning into her role as an intensivist, she assumed the position of coordinator for the ICU Research Group at Hospital del Mar. Her focus remained steadfast on investigating muscular dysfunction in critically ill patients, culminating in the leadership of multicenter projects and the publication of numerous impactful studies.

In 2022, she embarked on a pivotal career move by joining Savana, a trailblazing company specializing in comprehensive clinical data management. Here, leveraging cutting-edge technologies such as Natural Language Processing and Artificial Intelligence, Savana extracts valuable insights from electronic medical records (structured and unstructured information). As the head of the medical team, she spearhead initiatives aimed at developing innovative strategies for the diagnosis and treatment advancement of rare diseases, utilizing Savana’s advanced technological capabilities.

Juan Antinao Díaz

Juan Antinao Díaz
London
United Kingdom

SESSION TITLE: AAV-mediated gene targeting of natural antisense transcript as a novel treatment for Dravet syndrome

BIOGRAPHY

Dr Juan Antinao Diaz is a postdoctoral researcher at Institute for Women’s Health (IfWH), UCL, where he works on developing a novel pre-clinical gene therapy approach for Dravet Syndrome in Dr Karda’s laboratory. He obtained his MSc in Neuroscience from UCL in 2014, after studying physiotherapy at the University of Chile and working in the rehabilitation of neurological patients. Juan completed his PhD in 2020 at IfWH UCL, in a pre-clinical gene therapy for Dravet Syndrome. Juan is a member of the IfWH Equality, Diversity and Inclusion committee and in a member of Early Career Researchers committee. He is heavily involved in organising the summer school at IfWH. Juan is also a member of the British Gene and Cell therapy Society, participating in the Public and Patient Engagement sub-committee.

Martina Mainardi

Martina Mainardi
Milano
Italy

SESSION TITLE: Investigating constitutive or late restoration of Nav1.1 in interneurons in a Dravet mouse model

BIOGRAPHY

Martina Mainardi is currently in her first year of the Ph.D. program in Molecular Medicine at the University of Vita Salute San Raffaele in Milan, Italy. She initiated her scientific journey as a master’s thesis student in the research team led by Gaia Colasante at San Raffaele Hospital. Subsequently, she continued in the same team, progressing from a research fellow to a doctoral student. Her primary research interest revolves around Dravet Syndrome, specifically exploring the involvement of diverse neuronal populations and brain regions in its pathophysiology using animal models of the disease.

Else A. Tolner

Else A. Tolner
Leiden
Netherlands

SESSION TITLE: Functional EEG markers for indicating anti-seizure medication efficacy in Dravet Syndrome

BIOGRAPHY

Dr. Tolner is Assistant Professor at the Leiden University Medical Centre (LUMC), the Netherlands, where she has been working since 2011. Her research focuses on uncovering pathophysiological mechanisms and therapeutic targets for epilepsy and co-morbid migraine. To that end, she integrates data from functional studies in transgenic animal models with EEG findings from patients. She obtained her PhD in 2005 on neuroplasticity processes in epilepsy from the University of Amsterdam, under supervision of late Prof. Dr. Fernando Lopes da Silva. As postdoctoral researcher she worked in the lab of late Prof. Uwe Heinemann at the Charite, Berlin, and afterwards at Helsinki University in the team of Prof Kai Kaila, studying cortical network dynamics in epilepsy. She has received funding for her epilepsy and SUDEP studies through a Marie Curie Career Integration Grant (2011), CURE SUDEP award (2014) and Dutch League against Epilepsy Grants (2016 & 2022). Ongoing preclinical epilepsy studies concern identification of EEG indicators for seizure risk and treatment response in the Dravet Scn1a knock-out model.

Heidrun Potschka

Heidrun Potschka
Munich
Germany

SESSION TITLE: New therapies: Pros and cons about different approaches

BIOGRAPHY

Heidrun Potschka holds the Chair and is Professor of Pharmacology, Toxicology and Pharmacy at the Veterinary Faculty of the Ludwig-Maximilians-University in Munich.

Her research related to pathophysiology and pharmacotherapy of epilepsies has focused on mechanisms of pharmacoresistance and the identification and validation of novel targets and biomarkers for epilepsy management. Among others the work has contributed to preclinical testing of several now approved antiseizure medications. In recognition of her research, she received several awards including the international Michael Prize.

She has served as a committee member of different national and international committees and task forces including the ILAE Neurobiology commission, the ILAE AES Joint Translational Task Force and the ILAE Research and Innovation Task Force. Moreover, she is an associate editor of the journal Epilepsia.

Jacqueline Heighway

Jacqueline Heighway
Nice
France

SESSION TITLE: Negative dominance: A novel Dravet pathomechanism for therapeutic target and patient stratification

BIOGRAPHY

Jacqueline Heighway is a post-doctoral scientist whose research focus is on neurodevelopmental disorders caused by genetic variants of voltage-gated sodium channels. She studies the functional impact of sodium channel variants identified in patients and utilizes sequencing data to identify the expression patterns of brain sodium channels in the development of humans and model organisms. She obtained her PhD in the field of neuroscience from the University of Melbourne School of Medicine, Dentistry and Health Sciences, Australia and is now based at the Institut de Pharmacologie Moléculaire et Cellulaire affiliated with the Centre National de la Recherche Scientifique, the Institut National de la Santé et de la Recherche Médicale, and the Université Côte d’Azur, Nice, France.

Álvaro Abad

Álvaro Abad
Madrid
Spain

SESSION TITLE: How to successfully manage the challenges of developing advanced therapies for CNS disorders

BIOGRAPHY

A graduate in Law and Business Administration and Management from the Universidad Francisco de Vitoria, Álvaro has been a Senior Associate in Public Law and Regulated Sectors at Hogan Lovells Madrid since 2013.

Álvaro specializes in pharmaceutical law and advises pharmaceutical and biotech companies on a daily basis on legal issues related to medicinal products and the pharmaceutical industry, from clinical trials, early access, marketing authorization or pricing & reimbursement, to promotion and compliance issues, interactions with healthcare professionals and organizations and patient advisory groups or disputes at Farmaindustria and Autocontrol. Álvaro also provides on a regular basis advice on public procurement in the healthcare sector and is the point of contact at Hogan Lovells Madrid for Life Sciences & Health Care regulatory matters.

Álvaro is a member of the Scientific Committee of the Dravet Syndrome Foundation Spain and his work has been recognized by publications and legal directories such as Iberian Lawyer in its Forty under 40 awards in the Life Sciences Pharma category or as Recommended Lawyer in Legal 500 noting that “he is analytical and decisive, with extensive technical and legal knowledge”.

Krista Armstrong

Krista Armstrong
New Jersey
United States

SESSION TITLE: How to successfully manage the challenges of developing advanced therapies for CNS disorders

BIOGRAPHY

Dr. Krista Armstrong has over 26 years of experience delivering clinical trials in neuroscience. She is currently Senior Vice President & Head of the Global Neurosciences Business Unit, at Premier Research (a contract research organization (CRO), where she is responsible for the teams accountable for the overall strategy and delivery of studies in neurology and psychiatry.

Her experience includes a focus in pediatric CNS disorders starting when Premier Research was the Coordinating Center for the Best Pharmaceuticals for Children’s Act (BPCA) with the National Institutes of Child Health and Development (NICHD) in 2003. A study in status epilepticus, and the first ever (US) approved process for the exception to informed consent, was a part of the work delivered under the BPCA Coordinating Center. Her teams have managed multiple studies in rare epilepsies, including trials that lead to an orphan drug approval for seizures associated with Lennox-Gaustat Syndrome and Dravet Syndrome in patients two years of age and older.

Since joining the company in 1997, Dr. Armstrong has held multiple positions of leadership across all functions within project delivery. She serves as a primary point of contact ,as an executive leader, for Sponsor companies Premier Research collaborates with for execution of their development programs. She holds a doctorate in neuroscience from the University of Florida.

Gaia Colasante

Gaia Colasante
Milano
Italy

SESSION TITLE: Research Talk Session III

BIOGRAPHY

Dr. Gaia Colasante obtained her Master degree in Biotechnology from the University of Milan and her Ph.D. in Neuroscience and Molecular Medicine from Vita-Salute San Raffaele University, working in the laboratory of Dr. Vania Broccoli. She was interested in forebrain development and particularly analyzed the contribution of the transcription factor Arx in these processes. This interest led her to the Children’s Hospital of Philadelphia in Professor Jeffrey Golden’s lab, where she continued studying the role of the transcription factor Arx in GABAergic interneuronal migration using time-lapse imaging techniques. Upon returning to San Raffaele Hospital, she focused on cellular reprogramming, defining a cocktail of transcription factors capable of converting fibroblasts and pluripotent stem cells into GABAergic interneurons as a cell source for cell replacement therapies in epilepsy. More recently, she has utilized the CRISPR/dCas9 activator strategy to enhance the regulation of therapeutic genes in genetic and non-genetic forms of epilepsy. She is now a project leader at San Raffaele Hospital, managing a small team dedicated to the development of gene therapy for the treatment of Dravet syndrome and other neurological developmental disorders.

She has recently joined the International League Against Epilepsy Advanced Gene Therapies Task Force and she is a member of the scientific advisory board of the Dravet Syndrome Foundation.

Álvaro Sierra

Álvaro Sierra
Madrid
Spain

SESSION TITLE: Study of the myelination process in a murine model of Dravet Syndrome: Implications of cannabinoids

BIOGRAPHY

Álvaro Sierra is a first year PhD student in Biochemistry, Molecular Biology and Biomedicine in the Complutense University of Madrid. His research work is developed in the cannabinoids group of the Faculty of Medicine. With almost three years of experience researching on Dravet Syndrome, his doctoral thesis aims to study the pathophysiological processes related to DS and the therapeutic potential of cannabinoid compounds in this disease.

More speakers coming soon!

With the scientific endorsement of:

European Reference Network EpiCARE

European Paediatric Neurology Society

Venue

The European Dravet Syndrome Conference 2024 will take place at the Official College of Nursing of Madrid (Spain), located in the former factory of the American sewing machine company Singer, an emblematic building of the 20th century. The venue is located at Avenida de Menéndez Pelayo, 93, in the heart of the city and less than 10-minute walk away from Paseo del Prado and Atocha station.

With the scientific endorsement of:

European Reference Network EpiCARE

European Paediatric Neurology Society

Accommodation

If you are looking for a comfortable and convenient accommodation for the European Dravet Syndrome Conference 2024, you might want to check out Rafaelhoteles Atocha, a 4-star hotel near the conference venue as well as Atocha station in Madrid.

As a special offer for the conference attendees, Rafaelhoteles Atocha is giving a 20% additional discount on web rates. To book your room, visit their official website here and use the promo code CONGRESODRAVET2024. Don’t miss this opportunity to enjoy a pleasant stay at Rafaelhoteles Atocha!

With the scientific endorsement of:

European Reference Network EpiCARE

European Paediatric Neurology Society

Become a sponsor

As a patient organisation, we rely on the generosity of corporate sponsors to help us carry out our foundational activities.
Contact us at [email protected] and find out our various sponsoring options!

Sponsors

Platinum sponsorship

Silver sponsorship

Bronze sponsorship

With the great support of:

Official College of Nursing of Madrid

With the scientific endorsement of:

European Reference Network EpiCARE

European Paediatric Neurology Society

Registration

Attendance to the conference is free of charge, but mandatory for organisational reasons. You just need to fill in the fields below to register for the European Dravet Syndrome Conference 2024, that shall take place on Thursday 14th and Friday 15th of March 2024 in Madrid.  At no cost, the registration includes coffee and beverages, lunch, attendance to all sessions and the conference materials.

For more information on this event, visit the Home page.

    Please note that this conference will be held in person only. Please do not register if you do not plan to attend in person.

    Title *

    First name *

    Family name *

    Job title *

    Organisation name *

    Type of organisation *

    Country *

    How many days to do plan to attend? *

    Do you have any dietary requirements or allergies? If so, please enter here

    Telephone*

    Email address*

    With the scientific endorsement of:

    European Reference Network EpiCARE

    European Paediatric Neurology Society

    Reunión Anual de Familias

    Cuándo y Dónde: 16 de marzo de 2024 en Madrid

    Un año más y con mucha ilusión, la Fundación Síndrome de Dravet ya está organizando la Reunión Anual de Familias 2024, en la que podréis ver de primera mano los logros de la Fundación y de la investigación en esta enfermedad, así como algunas de las novedades más destacadas en el plano social. Este encuentro nos brinda además la ocasión ideal para reunirnos e interactuar con otras familias que comparten la misma enfermedad y de intercambiar experiencias, dudas y esperanzas.

    La Reunión Anual de Familias volverá a celebrarse en Madrid, más concretamente el sábado 16 de marzo de 2024 en el Colegio Rafaela Ybarra, un centro educativo que dispone de todas las instalaciones para que la reunión sea todo un éxito.

    El período de inscripción está abierto hasta el miércoles 21 de febrero de 2024 a las 23.59 horas, rellenando el formulario de inscripción con los datos de aquellas personas del ámbito familiar que vayan a asistir a este encuentro (no es necesario incluir los datos de aquellos miembros de la familia que no vayan a asistir).

    Al igual que hicimos en nuestros últimos encuentros anuales, aunque aún estamos trabajando en definir el establecimiento donde nos alojaremos, la Fundación Síndrome de Dravet volverá a hacerse cargo del alojamiento de aquellas familias de la Fundación que sean de fuera de Madrid y que efectivamente necesiten alojamiento para el fin de semana, con el fin de facilitar e incentivar la participación de todas las familias que integran la Fundación Síndrome de Dravet. También, nos encargaremos del catering y de otros detalles necesarios para la jornada del encuentro.

    Durante el encuentro anual, la Fundación pondrá en marcha también un servicio de cuidadores y de actividades lúdicas para las personas con síndrome de Dravet y sus hermanos, contando para ello con profesionales especializados en la materia.

    A pesar de que aún quedan unos meses para esta cita, ya estamos trabajando a fondo tanto en el programa como en el resto de detalles para que podamos disfrutar de un día estupendo junto con las demás familias Dravet que asistirán desde distintos lugares de España y más allá.

    ¡Os esperamos a todos!

    Agenda

    08.45 – 09.15

    Bienvenida a las familias

    09.15 – 09.45

    Inauguración y presentación del encuentro
    José Ángel Aibar, Fundación Síndrome de Dravet

    09.45 – 10.00

    Presentación de nuevas familias
    Amparo Bastos, Fundación Síndrome de Dravet

    10.00 – 10.20

    La Fundación Síndrome de Dravet
    José Ángel Aibar, Fundación Síndrome de Dravet

    10.20 – 10.40

    Estudio sobre la implicaciones cardíacas en el síndrome de Dravet
    Roger Esmel y Laia Turón, Hospital de la Santa Creu i Sant Pau

    10.40 – 11.10

    La longevidad y la mortalidad en el síndrome de Dravet
    Danielle Andrade, Universidad de Toronto

    11.10 – 11.40

    Descanso

    11.40 – 12.00

    Fenotipado de los fenómenos no epilépticos en el síndrome de Dravet
    Antonio Gil-Nagel, Hospital Ruber Internacional

    12.00 – 12.30

    Del descubrimiento de los canales de sodio a la terapia génica
    Franck Kalume, Universidad de Washington

    12.30 – 13.00

    Investigación: Fármacos en caminos
    Simona Giorgi, Fundación Síndrome de Dravet

    13.00 – 13.30

    Introducción a la terapia génica mediada por virus adenoasociado (AAV) como opción de tratamiento para enfermedades genéticas
    Candida Vila, Encoded Therapeutics

    13.30 – 14.00

    Manejo del status epiléptico y reanimación cardiopulmonar en el síndrome de Dravet
    María Lorenzo Ruiz, Hospital Universitario Puerta de Hierro

    14.00 – 16.00

    Comida

    16.00 – 16.30

    Cuando las crisis mejoran y empeora la conducta: ¿qué hacer?
    Neus Mari Cardona, Synaptia Health Projects

    16.30 – 17.00

    Técnicas de autoprotección para el síndrome de Dravet
    Israel Bárcenas, Sé Defenderme Sola

    17.00 – 17.50

    El papel de las familias en la educación afectivo-sexual de personas con síndrome de Dravet
    Natalia Rubio Arribas, Asociación Estatal Sexualidad y Discapacidad

    17.50 – 18.15

    Descanso

    18.15 – 18.45

    Certificado de discapacidad, dependencia y medidas legales de apoyo
    Valeria Herrera, Fundación Síndrome de Dravet

    18.45 – 19.00

    Premios Dravet 2023
    José Ángel Aibar, Fundación Síndrome de Dravet

    19.00

    Clausura del encuentro
    José Ángel Aibar, Fundación Síndrome de Dravet

    Lugar del encuentro

    Un año más, la Reunión Anual de Familias 2024 tendrá lugar en el Colegio Rafaela Ybarra, en Avda. Rafaela Ybarra, 73 de Madrid.

    Este colegio es un centro integrado que imparte enseñanzas desde Educación Infantil hasta Ciclos Formativos de Formación Profesional y Bachillerato. La titularidad del centro la ostentan las religiosas de los Ángeles Custodios y su nombre se debe a Rafaela Ybarra, beatificada por el Papa Juan Pablo II en 1984 por su labor con la infancia y juventud femenina.

    Este centro educativo cuenta con todas las instalaciones necesarias para acoger nuestro encuentro de familias.

    Colegio Rafaela Ybarra Madrid

    ***Alojamiento

    Un año más, la Fundación Síndrome de Dravet volverá a hacerse cargo del coste del alojamiento de aquellas familias de la Fundación que sean de fuera de Madrid y que efectivamente necesiten alojamiento para el fin de semana, con el objetivo de facilitar e incentivar la participación de todas las familias que componen la Fundación Síndrome de Dravet.

    Indícalo en el formulario de inscripción para que lo podamos tener en cuenta, de tal manera que te mantengamos informado sobre el alojamiento en el que nos quedaremos las familias de la Fundación Síndrome de Dravet que asistamos al encuentro.

    Hotel

    Conviértase en patrocinador

    Como organización de pacientes, dependemos de la generosidad de las empresas patrocinadoras para poder llevar a cabo nuestras actividades fundacionales.
    Póngase en contacto con nosotros en [email protected] e infórmese de las diversas opciones de patrocinio.

    Patrocinadores

    Patrocinador Platino

    Patrocinador Plata

    Patrocinador Bronce

    Inscripción

    La asistencia a esta conferencia es gratuita, pero obligatoria por motivos organizacionales. Sólo tienes que rellenar el formulario de abajo para inscribirte en la Reunión Anual de Familias 2024 de la Fundación Síndrome de Dravet, que tendrá lugar el próximo 16 de marzo de 2024 en Madrid. La inscripción es gratuita e incluye el café y las bebidas, la comida, la asistencia a todas las sesiones, el material de la conferencia y el servicio de cuidadores para las personas con síndrome de Dravet y sus hermanos.
    Para más información sobre este evento, visite la página de inicio.

      Nombre y apellidos del progenitor1

      Nombre y apellidos del progenitor2

      Número total de asistentes a la Reunión Anual de Familias*

      Nombre del afectado

      Fecha de nacimiento del afectado

      Nombre hermano1

      Fecha de nacimiento hermano1

      Nombre hermano2

      Fecha de nacimiento hermano2

      Nombre hermano3

      Fecha de nacimiento hermano3

      Nombre hermano4

      Fecha de nacimiento hermano4

      ¿Necesitaréis alojamiento?*

      Fecha de llegada al hotel*

      Hora de llegada al hotel*

      Fecha de salida del hotel*

      Hora de salida del hotel*

      Observaciones/Comentarios

      Teléfono de contacto*

      Correo electrónico*

      Proud member of:

      ¡Haz tu donación!

      Tu aportación se destinará a ayudar a nuestros guerreros y sus familias en su lucha contra el síndrome de Dravet, para conseguir que no pierdan nunca la sonrisa.

      Esperanza

      Uso de cookies

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      TERMS & CONDITIONS

      The European Dravet Syndrome Conference 2024 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

      The conference shall take place at the Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Thursday 14th and of  Thursday 15th March 2024. Attendance to this conference is free of charge, but mandatory for organisational reasons.

      Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

      The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

      Admittance to the conference without registration cannot be granted.

      Conference Attendance
      Upon arrival at the Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

      Cancellation Policy
      The Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

      Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

      Name Change
      All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 5th of March 2024. The procedure allows giving the last name, first name, and email address of the new participant.

      Personal Data
      Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

      Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

      Photography
      The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant. 

      Disclaimer
      The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

      Copyright
      The participant is allowed to use the conference documentation exclusively for his/her personal needs.

      TERMS & CONDITIONS

      The Dravet Syndrome Conference 2023 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

      The conference shall take place at the Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Thursday 23rd of March 2023. Attendance to this conference is free of charge, but mandatory for organisational reasons.

      Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

      The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

      Admittance to the conference without registration cannot be granted.

      Conference Attendance
      Upon arrival at the Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 23rd of March at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

      Cancellation Policy
      Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

      Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

      Name Change
      All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 16th of March 2023. The procedure allows giving the last name, first name, and email address of the new participant.

      Personal Data
      Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

      Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

      Photography
      The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant. 

      Disclaimer
      The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

      Copyright
      The participant is allowed to use the conference documentation exclusively for his/her personal needs.

      TERMS & CONDITIONS

      The European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2023 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

      The conference shall take place at the Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Friday 24th of March 2023. Attendance to this conference is free of charge, but mandatory for organisational reasons.

      Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

      The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

      Admittance to the conference without registration cannot be granted.

      Conference Attendance
      Upon arrival at the Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 24th of March at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

      Cancellation Policy
      Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

      Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification
      by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

      Name Change
      All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 17th of March 2023. The procedure allows giving the last name, first name, and email address of the new participant.

      Personal Data
      Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

      Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

      Photography
      The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant.

      Disclaimer
      The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

      Copyright
      The participant is allowed to use the conference documentation exclusively for his/her personal needs.

      TERMS & CONDITIONS

      The European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

      The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Friday 1st of April 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

      The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not comprise travelling and accommodation costs or any other personal expenses.

      Admittance to the workshop without registration cannot be granted.

      Conference Attendance
      Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 1st of April at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

      Cancellation Policy
      Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

      Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days
      prior the event. Failure to attend the event without prior written notification
      by email may incur a no-show fee, which shall cover individual organizational,
      material and catering costs.

      Name Change
      All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

      Personal Data
      Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

      Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

      Photography
      The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant.

      Disclaimer
      The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

      Copyright
      The participant is allowed to use the conference documentation exclusively for his/her personal needs.

      TERMS & CONDITIONS

      The Dravet Syndrome Conference 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

      The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Thursday 31st of March 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

      The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

      Admittance to the conference without registration cannot be granted.

      Conference Attendance
      Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 31st of March at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks. 

      Cancellation Policy
      Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

      Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

      Name Change
      All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

      Personal Data
      Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

      Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

      Photography
      The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant. 

      Disclaimer
      The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

      Copyright
      The participant is allowed to use the conference documentation exclusively for his/her personal needs.