Jornadas Científicas y Familiares 2023
Scientific and Family Days 2023
Dravet Syndrome Conference 2023
When and where: 23rd of March 2023 in Madrid
Dravet Syndrome Foundation Spain organises a new edition of the Dravet Syndrome Conference, which will take place on Thursday 23rd of March 2023 in Madrid, Spain.
After the great success of the 2022 edition, we are proud to re-engage this meeting in person, open to all clinicians, researchers, 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 to 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.
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 Dravet Syndrome Conference 2023 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.
Registration will be free of charge, but mandatory for organizational reasons.
With the scientific endorsement of:
European Reference Network EpiCARE
European Paediatric Neurology Society
European Academy of Neurology
Agenda
08.30 – 09.00
Welcome & Registration
09.00 – 09.15
Opening statements & Introduction to the program
Chair: José Ángel Aibar, Fundación Síndrome de Dravet
09.15 – 09.45
Dravet syndrome perspectives
Chair: Lieven Lagae, KU Leuven
Dravet syndrome by a parent
Lauraine Mckenna, Patrick’s mom
Dravet syndrome by a young epileptologist
tbc
09.45 – 11.15
Coexisting comorbidities in Dravet syndrome
Chair: Lieven Lagae, KU Leuven
Sleep disorder in Dravet syndrome
tbc
Cognition in Dravet syndrome
Lieven Lagae, KU Leuven
Behaviour management in Dravet syndrome
tbc
Neuropsychiatric disorders in Dravet syndrome
Susana Boronat, Hospital Sant Pau Barcelona
SUDEP in Dravet syndrome. Can it be mitigated?
Franck Kalume, University of Washington
11.15 – 11.45
Networking Coffee Break & Industry Exhibition
11.45 – 13.00
Dravet syndrome in adults
Chair: Danielle Andrade, University of Toronto
The Dravet syndrome patient journey: The Spanish journey
tbc
Comorbidities in adults with Dravet syndrome
Vicente Villanueva, Hospital La Fe
Transition taking comorbidities into account
Danielle Andrade, University of Toronto
Undiagnosed adults with Dravet syndrome. What can be done?
Sarah Weckhuysen, University of Antwerp
13.00 – 14.30
Networking lunch & industry exhibition
14.30 – 15.30
What’s coming next in Dravet syndrome? 1/2
Chair: Rajvinder Karda, EGA Institute for Women’s Health at UCL
Update on the research pipeline for Dravet syndrome
Vittoria Spinosa, Fundación Síndrome de Dravet
Clinical update on soticlestat (TAK-935) for the treatment of Dravet syndrome
Vicente Villanueva, Hospital La Fe
Scientific talk II
tbc
Scientific talk III
tbc
15.30 – 16.00
Networking Coffee Break & Industry Exhibition
16.00 – 16.45
What’s coming next in Dravet syndrome? 2/2
Chair: Astrid Pañeda, Forge Biologics
Scientific talk I
tbc
Scientific talk II
tbc
Scientific talk III
tbc
16.45 – 17.00
The power of patient groups in drug development
Vittoria Spinosa, Fundación Síndrome de Dravet
17.00
Close & thank-yous
José Ángel Aibar, Fundación Síndrome de Dravet
Venue
The Dravet Syndrome Conference 2023 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.
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.
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With the scientific endorsement of:
European Reference Network EpiCARE
European Paediatric Neurology Society
European Academy of Neurology
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!
Registration
Attendance to this conference is free of charge, but mandatory for organisational reasons. You just need to fill in the fields below to register for the Dravet Syndrome Conference 2023, that shall take place on the 23rd of March 2023 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.
European DS Advanced Therapies Meeting
When and where: 24th of March 2023 in Madrid
After the success of the first edition, Dravet Syndrome Foundation Spain and the European Dravet Syndrome Advanced Therapies Working Group (EDSAT) are delight to organise the second edition of the European Dravet Syndrome Advanced Therapies (EDSAT) Meeting, a 1-day networking event satellite to the Dravet Syndrome Conference 2023.
This international meeting will take place in person on Friday 24th of March 2023 in Madrid, Spain. The EDSAT Meeting will provide the latest updates on the Advanced Therapies in Medicinal Products (ATMPs) for Dravet syndrome. In addition, attendees will have the unique opportunity to exchange ideas and foster collaborations with key scientists and guest industry, clinical and regulatory experts in product and clinical development.
The registration is free of charge, but mandatory for organisational reasons. Registration also includes free access to the networking dinner, in the evening of 23rd of March, 2023. However, to maximise networking opportunities, this event is limited to 50 attendees, who will be processed on a first-come, first-served basis. To encourage participation of usually underrepresented countries in Europe, travel grants will be offered to students and postdocs coming from those countries. The EDSAT Meeting will be open to students, early career scientists, leading investigators, policy makers and other professionals from the pharmaceutical and healthcare sector with the common goal of promoting Dravet syndrome research and patient access to ATMPs.
The EDSAT Meeting 2023 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.
As alraedy mentionted, registration will be free of charge, but mandatory for organizational reasons.
Agenda
08.30 – 09.00
Welcome & Registration
09.00 – 09.10
Opening statements & Introduction to the program
Chair: José Ángel Aibar, Fundación Síndrome de Dravet
09.10 – 09.55
Research Talk Session I
Short talk I
tbc
Short talk II
tbc
Short talk III
tbc
09.55 – 10.40
Workshop 1: Existing ASMs for Dravet syndrome and related epilepsies
Introduction to existing ASMs for Dravet syndrome and related epilepsies
Heidrun Potschka, Ludwig-Maximilians-University Munich
Dynamic group discussions on existing ASMs for Dravet syndrome and related epilepsies
All attendees
Pooling of ideas & Conclusions
EDSAT Group leaders
10.40 – 11.00
Poster Session & Networking Coffee Break
11.00 – 11.30
Research Talk Session II
Flash talk I
tbc
Flash talk II
tbc
Flash talk III
tbc
11.30 – 12.30
Workshop 2: Pros and cons of the different advanced therapy strategies for Dravet syndrome
Introduction to the pros and cons of the different advanced therapy strategies for Dravet syndrome
Gabriele Lignani, UCL Queen Square Institute of Neurology
Rubén Hernández, CIMA Universidad de Navarra
Dynamic group discussions on the pros and cons of the different advanced therapy strategies for Dravet syndrome
All attendees
Pooling of ideas & Conclusions
EDSAT Group leaders
12.30 – 14.00
Poster Session & Networking Lunch
14.00 – 14.45
Expert Panel: New insights into the neuropathophysiology of Dravet Syndrome
Chair: Massimo Mantegazza, Côte d’Azur University & CNRS
14.45 – 15.15
Poster Session & Networking Coffee Break
15.15 – 15.45
Research Talk Session III
Short talk I
tbc
Short talk II
tbc
15.45 – 16.00
Young Investigator Award
José Ángel Aibar, Fundación Síndrome de Dravet
16.00
Close & thank-yous
José Ángel Aibar, Fundación Síndrome de Dravet
Venue
The Dravet Syndrome Conference 2023 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.
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.
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Siguiente
Submit your Abstract and Apply for a Travel Grant
Welcome to the abstract submission and travel grant application 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].
Twenty travel grants of max. 300 EUR will be awarded to PhD students and postdocs from Armenia, Bulgaria, Croatia, Czech Republic, Estonia, Georgia, Hungary, Latvia, Lithuania, Malta, Poland, Romania, Slovakia, Slovenia, Turkey, and Slovenia to cover travel and/or accommodation expenses to attend the meeting. Applicants will book their own travel tickets and accommodation, and send (i) a copy of the tickets/booking reservations, (ii) a copy of corresponding invoice(s) and (iii) the proof(s) of payment(s) to Dravet Syndrome Foundation Spain at [email protected] for reimbursement once the event has taken place.
It is compulsory to submit an abstract to apply for a travel grant. Travel grants may be awarded to workshop attendees even if their abstract is not selected for oral presentation.
Grants will be awarded on a first-come first-served basis. In case of travel grant budget remains, grants will be awarded to other PhD students and postdocs, again on a first-come first-served basis, until the budget is finalised. Therefore, all PhD students and postdocs are invited to apply for a grant!
DEADLINES:
Please, remember the following important dates:
- Abstract Submission Deadline: 15th of January 2023 at 23:59 CET.
- Email notification of Selected speakers: 27th of January 2023.
- Reception of final presentation deadline: 17th of March 2023 at 23:59 CET.
- Conference Date: 24th of March 2023.
ABSTRACT SUBMISSION GUIDELINES
Abstracts may be selected for poster and/or short (12 minutes of presentation plus 3 minutes for discussion) or flash (8 minutes of presentation plus 2 minutes for discussion) oral presentations. Abstracts should highlight original research or protocols on advanced therapy medicinal products (ATMPs) for Dravet syndrome or related disorders. If different abstract and presenting author, more than one abstract can be submitted per institution.
Abstracts will be evaluated by the Scientific Organizing Committee, composed 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 on the day of the workshop.
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 AND TRAVEL GRANT SUBMISSION FORM
Become a sponsor
To learn about the EDSAT2023 sponsoring options, contact us at [email protected] or by phone at +34 722 307 252.
Registration
Attendance to this 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 Advanced Therapies Meeting 2023, that will take place on next 24th of March 2023 in Madrid. At no cost, the registration includes coffee and beverages, lunch, attendance to all sessions and the conference materials. However, to maximise networking opportunities, this event is limited to 50 attendees, who will be processed on a first come first served basis.
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
Iniciativas y proyectos de investigación de la Fundación Síndrome de Dravet en marcha
Tomás García-Ferrer, Fundación Síndrome de Dravet
10.40 – 11.00
Proyecto Fortalezas y dificultades en familias con síndrome de Dravet
Itziar Alonso-Arbiol, Universidad del País Vasco
11.00 – 11.30
Descanso
11.30 – 12.00
Proyecto DANDA: Evaluación de los trastornos neuropsiquiátricos asociados al síndrome de Dravet
Susana Boronat, Hospital de la Santa Creu i Sant Pau
12.00 – 12.30
Investigación: Fármacos en caminos
Vittoria Spinosa, Fundación Síndrome de Dravet
12.30 – 12.55
Charla de investigación I
tbc
12.55 – 13.20
Charla de investigación II
tbc
13.20 – 13.40
Charla de investigación III
tbc
13.40 – 14.00
Charla de investigación IV
tbc
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.
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.
¡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.
