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-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
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
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 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
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
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
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
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
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
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
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
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
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.
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.
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.
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.
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.
