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

European Academy of Neurology

 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
Jorge Andrada, President, Official College of Nursing of Madrid
Helen Cross, President, International League Against Epilepsy

09.15 – 09.45

Dravet syndrome perspectives
Chair: Lieven Lagae

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

The impact of climate change on Dravet syndrome patients and families
tbc

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 – 17.00

What’s coming next in Dravet syndrome? 2/2
Chair: tbc

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

The power of AI and machine learning to diagnose, treat and manage rare disease patients
tbc

Scientific presentation #3
tbc

17.00

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 – 09.55

Research Talk Session I

Research talk #1
tbc

Research talk #2
tbc

Research talk #3
tbc

09.55 – 10.40

Research Workshop 1: 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

10.40 – 11.10

Poster Session & Networking Coffee Break

11.00 – 11.30

Research Talk Session II

Research talk #1
tbc

Research talk #2
tbc

11.30 – 12.30

Research Workshop 2: Dravet syndrome patient stratification

Introduction to the topic
Rima Nabbout, Hôpital Necker Enfants Malades

Dynamic group discussion
Everyone

12.30 – 14.00

Poster Session & Networking Lunch

14.00 – 14.45

Expert Panel Discussion: How to successfully manage the challenges of developing advanced therapies for CNS disorders
Chair:  Gabriele Lignani, University College London

14.45 – 15.15

Poster Session & Networking Coffee Break

15.15 – 16.00

Research Talk Session III

Research talk #1
tbc

Research talk #2
tbc

Research talk #3
tbc

16.00

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

Ángel Aledo

Ángel Aledo-Serrano
Hospital Vithas Madrid La Milagrosa
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
UCL Great Ormond Street Institute of Child Health
United Kingdom

SESSION TITLE: Dravet syndrome by an experienced 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).

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 González
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.

Franck Kalume

Franck Kalume
University of Washington
United States of America

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).
Danielle Andrade

Danielle Andrade
Universirty of 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
University Hospital La Fe
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
Duke University
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
Dravet Syndrome Foundation
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
Hôpital Necker Enfants Malades
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
KU 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
Encoded Therapeutics
United States of America

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.

More speakers coming soon!

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.

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

Coming soon!

Gold sponsorship

With the support of:

Official College of Nursing of Madrid

European Academy of Neurology

Submit your Abstract

Welcome to the abstract submission form. Abstracts that are sent via e-mail or fax will not be included in the abstract assessment process by the Scientific Organizing Committee.
Please note that to ensure diversity we seek to allow only one oral platform lecture (short or flash) per presenting author. If the presenting author is different, more than one oral presentation can be submitted by institution.
For technical problems or submission support, please contact [email protected].

DEADLINES:
Please, take into account the following important dates:

  • Abstract Submission Deadline: Monday 20th of November 2023 at 23:59 CET.
  • Email notification of Selected speakers: 28th of November 2023.
  • Reception of final presentation deadline: 4th of March 2024 at 23:59 CET.
  • Conference Date: 14-15th of March 2024.

ABSTRACT SUBMISSION GUIDELINES
Abstracts may be selected for poster and/or oral (12 minutes of presentation plus 3 minutes for discussion) presentations. Abstracts should highlight original innovative research on Dravet syndrome, with a special focus on advanced therapy medicinal products (ATMPs). If different abstract and presenting author, more than one abstract can be submitted per institution.

Abstracts will be evaluated by members of the European Dravet Syndrome Advanced Therapies Working Group (EDSAT WG). The EDSAT WG is an alliance formed by leading European scientists in the field of ATMPs for Dravet syndrome and related disorders.

For confidentiality reasons, only the title, authors and affiliations will be published in the online booklet. Full abstracts will only be published in the printed booklet that attendees will receive during as part of the conference bag.

AUTHORS AND FORMAT

  • Authors should indicate their oral presentation preference: short talk (15 minutes) or flash talk (10 minutes). The Scientific Committee reserves the right to decide on the final presentation type.
  • Abstracts with multiple authors can only be submitted once, by the presenting author.
  • The presenting author assumes full responsibility for the contents of the abstract and confirms that all other authors consent to the submission of the abstract.
  • All abstracts must be submitted and presented in English.
  • Abstracts must have the following structure: Introduction, Methodology, Results, Conclusions, and Acknowledgement/Funding, if applicable.
  • Abbreviations should be defined the first time they appear in the text, before being used as an abbreviation only. Please, do not define or use abbreviations in the title.
  • The abstract’s title can contain a maximum of 100 characters.
  • Abstracts should have between 1250 and 1500 characters. Title, authors’ names and affiliations are not included in this limit.
  • Tables, figures, or other graphics are not allowed during abstract submission.
  • Authors affiliations should be written correctly, using capital letters, and avoiding abbreviations.

EVALUATION
Special consideration will be given to:

  • Clarity in the exposition of the different sections.
  • Innovative potential.
  • Scientific impact and social relevance.
  • Soundness of the applied methodology.
  • Consistency between the obtained results and the proposed conclusions.

Selected speakers will receive all information regarding time and format of their presentations in a separate e-mail after evaluation.

If you face any problems during the submission process, contact us directly at [email protected].

ABSTRACT SUBMISSION FORM

    Title *

    First name *

    Family name *

    Job title *

    Organisation name *

    Type of organisation *

    Country *

    Telephone *

    Email address *

    Title of the abstract (max. 100 characters) *

    Characters left: 100

    List of authors and affiliations *

    Text of the abstract, including introduction, methodology, results, conclusions, and funding if applicable (between 1250 and 1500 characters) *

    Characters left: 1500

    Oral presentation preference *

    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 *

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      Organisation name *

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

      Telephone*

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      Reunión Anual de Familias

      Cuándo y Dónde: 25 de marzo de 2023 en Madrid

      Un año más y con mucho ilusión, la Fundación Síndrome de Dravet ya está preparando la Reunión Anual de Familias 2023, en la que podréis comprobar de primera mano los progresos de la Fundación y de la investigación en esta enfermedad, así como algunas de las novedades más relevantes en el plano social. Este encuentro nos ofrece además la oportunidad perfecta para encontrarnos e interactuar con otras familias que viven con la misma enfermedad a la misma vez que intercambiar experiencias, preocupaciones y esperanzas.

      La Reunión Anual de Familias volverá a tener lugar en Madrid, más concretamente el sábado 25 de marzo de 2023 en el Colegio Rafaela Ybarra, un centro educativo que cuenta con todas las instalaciones para que la reunión sea todo un éxito.

      El período de inscripción está abierto hasta el martes 31 de enero de 2023 a las 23.59 horas, cumplimentando el formulario de inscripción con los datos de aquellas personas del ámbito familiar que vayan a acudir 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 subvencionar y pagar gran parte 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. También, nos encargaremos del catering necesario para la jornada del encuentro.

      Durante el encuentro anual, la Fundación pondrá en marcha un servicio de cuidadores y de actividades de ocio para los niños Dravet y sus hermanos. Además, contaremos con profesionales especializados y nos aseguraremos también de que se cumplan todas las medidas sanitarias necesarias.

      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 magnífico día junto con las demás familias Dravet que asistirán venidas de toda la geografía española y más allá.

      ¡Esperamos veros 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: Catalizador de la investigación del síndrome de Dravet
      José Ángel Aibar, Fundación Síndrome de Dravet

      10.20 – 10.40

      El kit de investigación para el síndrome de Dravet
      Verónica Rivero Hernández, Fundación Síndrome de Dravet

      10.40 – 11.00

      Mi (otro/a) hijo/a no tiene síndrome de Dravet: Cuando hay hermanos/as sin la enfermedad
      Itziar Alonso-Arbiol, Universidad del País Vasco

      11.00 – 11.30

      Descanso

      11.30 – 12.00

      Proyecto DANCE: Evaluación de los trastornos neuropsiquiátricos asociados al síndrome de Dravet
      Susana Boronat, Hospital de la Santa Creu i Sant Pau

      12.00 – 12.30

      Mejorar la transición de la atención pediátrica a la atención de adultos
      Danielle Andrade, Universidad de Toronto

      12.30 – 13.00

      Investigación: Fármacos en caminos
      Vittoria Spinosa, Fundación Síndrome de Dravet

      13.00 – 13.30

      Actualización clínica de clemizol (EPX-100) para el tratamiento del síndrome de Dravet
      Lorianne Masuoka, Epygenix

      13.30 – 14.00

      Actualización clínica de soticlestat (TAK-935) para el tratamiento del síndrome de Dravet
      Manuel Toledo, Hospital Vall d’Hebron

      14.00 – 16.00

      Comida

      16.00 – 16.30

      Los trastornos del sueño en el síndrome de Dravet
      Víctor Soto, Hospital Infantil Universitario Niño Jesús

      16.30 – 17.15

      El papel de la enfermería escolar
      Natividad López Langa, AMECE

      17.15 – 17.35

      Programa de Apoyo Psicosocial de la Fundación Síndrome de Dravet
      Carla Bonafé, Neuropsicóloga

      17.35 – 18.00

      Descanso

      18.00 – 18.30

      La experiencia de una madre y psicóloga
      Ares Regué, Neuropsicóloga y mamá de Athenea

      18.30 – 18.45

      Premios Dravet 2023
      José Ángel Aibar, Fundación Síndrome de Dravet

      18.45 – 19.00

      Clausura del encuentro
      José Ángel Aibar, Fundación Síndrome de Dravet

      Lugar del encuentro

      La Reunión Anual de Familias 2023 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 subvencionar y pagar gran parte 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

      Platinum sponsorship

      ¡En breve!

      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 2023 de la Fundación Síndrome de Dravet, que tendrá lugar el próximo 25 de marzo de 2023 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*

        ¡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.