Jornadas Científicas y Familiares 2022
Scientific and Family Days 2022
Dravet Syndrome Conference 2022
When and where: 31st of March 2022 in Madrid
The Dravet Syndrome Conference 2022 will take place in person on Thursday 31st of March 2022 in Madrid, Spain, and registration is free of charge but mandatory for organisational reasons.
We are proud to re-engage this meeting in person, which will bring together a range of professionals from all over the world including clinicians, researchers, and professionals from the pharmaceutical industry committed to improving the lives of people with epilepsy.
The Dravet Syndrome Conference 2022 aims to update professionals on diagnosis, management, available treatments, and therapies in development, and to create an ideal platform for discussion and exchange between scientists, physicians, regulators, patient representatives, and industry partners.
During this conference, presentations will include the latest advances in the diagnosis and treatment of Dravet syndrome, including both new drugs available and new treatments in development. This event will therefore present a remarkable opportunity for scientific exchange and networking.
The organising committee therefore encourages all stakeholders in health and medicines R&D 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 2022 will be held at the Great Amphitheatre of the Illustrious Official College of Physicians of Madrid, located less than a 5-minute walk away from Paseo del Prado and Atocha station.
Covid-19 Safety Information
In accordance with the regulations in force in the Community of Madrid for the organisation of congresses and events of this type, attendees must follow the basic preventive measures for Covid-19, which include, among others, the mandatory use of masks and hand sanitisers. As an option, SARS-CoV-2 rapid antigen tests will be available to attendees free of charge, although they will not be compulsory for access to the event.
As local regulations may change, more information will be provided closer to the date.
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 – 09.30
Dravet syndrome by a parent
Alicia de Santos, Raúl’s mom
09.30 – 10.50
Dravet syndrome and current treatment strategies
Chair: Lieven Lagae, KU Leuven
Defining Dravet syndrome for precision medicines
Ingrid Scheffer, University of Melbourne
New treatment algorithm for Dravet syndrome
Lieven Lagae, KU Leuven
Management of acute seizures and emergency protocol
Helen Cross, Great Ormond Street Institute of Child Health
Treating Dravet syndrome beyond seizures
Stéphane Auvin, Hôpital Robert Debré
10.50 – 11.20
Networking Coffee Break & Industry Exhibition
11.20 – 12.40
Dravet syndrome in adults
Chair: Danielle Andrade, University of Toronto
Transition from paediatric to adult care in patients with developmental and epileptic encephalopathies
Danielle Andrade, University of Toronto
Dissecting Dravet syndrome in adults
Vicente Villanueva, Hospital La Fe
Real-world data on antiseizure drugs for adults with Dravet syndrome
Catherine Chiron, Necker Enfants Malades University Hospital
Open discussion: Paediatric and adult neurologists
All previous physicians
12.40 – 13.00
Charlotte Project: Consensus for PROs management in Dravet Syndrome
Eduardo Junco, Spain Medical Director, Zogenix
José Ángel Aibar, Fundación Síndrome de Dravet
Ángel Aledo, Hospital Ruber Internacional
13.00 – 14.10
Networking Lunch Break & Industry Exhibition
14.10 – 15.00
Looking to the future treatment of Dravet syndrome
Chair: Franck Kalume, University of Washington
Update on the research pipeline for Dravet syndrome
Elena Cardenal, Fundación Síndrome de Dravet
Clinical update on STK-001 for the treatment of Dravet syndrome
Javier Avendaño, Stoke Therapeutics
Clinical update on ETX101 for the treatment of Dravet syndrome
Salvador Rico, Encoded Therapeutics
15.00 – 15.20
The power of patient groups in drug development
Elena Cardenal, Fundación Síndrome de Dravet
15.20 – 15.50
Networking Coffee Break & Industry Exhibition
15.50 – 16.30
FSD 2021 Funded Projects in Advanced Therapies
Chair: Hugues Abriel, University of Bern
Reduction of inflammatory responses against adenoviral vectors to improve safety and efficacy of gene therapy for Dravet syndrome
Rubén Hernández-Alcoceba, CIMA – University of Navarra
A novel homeostatic response boosted as therapy for Dravet syndrome: treatment with nasal application of engineered cholecystokinin
Massimo Mantegazza, IPMC CNRS Côte d’Azur
16.30 – 16.55
Open discussion on the future for Dravet syndrome and related disorders
Selected previous speakers
16.55 – 17.00
Close & thank-yous
José Ángel Aibar, Fundación Síndrome de Dravet
With the scientific endorsement of:
European Reference Network EpiCARE
European Paediatric Neurology Society
European Academy of Neurology
Venue
The Dravet Syndrome Conference 2022 will take place at the Great Amphitheatre of the Illustrious Official College of Physicians of Madrid (Spain). The venue is located at Calle de Santa Isabel, 51, in the heart of the city and less than a 5-minute walk away from Paseo del Prado and Atocha station.
The Great Amphitheatre is the main lecture hall of the venue, is part of a building constructed in 1831, and declared as a Cultural Heritage Asset.
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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 fundraising@dravetfoundation.eu and find out our various sponsoring options!
Sponsors
Platinum sponsorship
Gold sponsorship
Silver sponsorship
Bronze sponsorship
More coming soon!
With the scientific endorsement of:
European Reference Network EpiCARE
European Paediatric Neurology Society
European Academy of Neurology
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 2022, that shall take place on the 31st of March 2022 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.
With the scientific endorsement of:
European Reference Network EpiCARE
European Paediatric Neurology Society
European Academy of Neurology
European DS Advanced Therapies Meeting
When and where: 1st of April 2022 in Madrid
Dravet Syndrome Foundation Spain and the Dravet Syndrome Advanced Therapies European Working Group (DS ATEWG), formed by top scientist in the field of advanced therapies for Dravet syndrome and related disorders, organise the first edition of the European Dravet Syndrome Advanced Therapies (EDSAT) Meeting, a 1-day satellite meeting to the Dravet Syndrome Conference 2022.
This meeting will take place in person on Friday 1st of April 2022 in Madrid, Spain, and registration is free of charge but mandatory for organisational reasons. Registration also includes free access to the networking dinner the evening before. However, to maximise networking opportunities, this event is limited to 50 attendees, who will be processed on a first-come, first-served basis.
In November 2020, the Dravet Syndrome Foundation Spain launched a pioneer and international initiative to bring together European experts in advanced therapies for Dravet syndrome, the DS ATEWG. Through a scientific and multidisciplinary forum focused on collaboration and cooperation, this initiative aims to remove barriers between institutions to advance fundamental and translational science in Dravet syndrome for advanced therapies.
This international networking event, to be held in Madrid, Spain, on Friday 1st of April 2022, will provide an excellent opportunity to meet friends and colleagues, foster new relationships and collaborations, and develop strategies for efficient and productive scientific outcomes.
Scientists will share first-hand information about their most recent advances in advanced therapies and Dravet syndrome research. In addition, attendees will learn from and discuss with guest industry regulatory and clinical experts in product and clinical development.
Overall, EDSAT Meeting will be an ideal platform for exchange and networking, where students, early career scientists, leading investigators, policy makers, pharmaceutical industry and other sectors in healthcare converge and collaborate for the common goal of promoting Dravet syndrome research and patient access to advanced therapies.
The EDSAT Meeting will be held at the Gregorio Marañón lecture hall of the Illustrious Official College of Physicians of Madrid, located less than 5-minute walk away from Paseo del Prado and Atocha station, and has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575.
Covid-19 Safety Information
In accordance with the regulations in force in the Community of Madrid for the organisation of congresses and events of this type, attendees must follow the basic preventive measures for Covid-19, which include, among others, the mandatory use of masks and hand sanitisers. As an option, SARS-CoV-2 rapid antigen tests will be available to attendees free of charge, although they will not be compulsory for access to the event.
As local regulations may change, more information will be provided closer to the date.
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 – 09.40
Research Talk Session I
SCN1A variants associated with Dravet syndrome and other seizure disorders
Shraddha Dubey, SIB Swiss Institute of Bioinformatics
Spectral power changes as acute biomarkers in Dravet treatment
Shir Quinn, Tel Aviv University
SCN1AR613X: A novel open-access mouse model for Dravet syndrome research
Anat Mavashov, Tel Aviv University
09.40 – 10.40
Workshop 1: Dravet Syndrome Research Models
Introduction to Dravet syndrome research models
Rajvinder Karda, UCL
Dynamic group discussions on Dravet syndrome models
All attendees
Pooling of ideas & Conclusions
EDSAT Group leaders
10.40 – 11.00
Networking Coffee Break
11.00 – 11.30
Research Talk Session II
dCas9-Based Scn1a Gene Activation as a treatment for Dravet Syndrome
Simona Bagnasco, Ospedale San Raffaele
A novel homeostatic response of CCK+ GABAergic neurons boosted as therapeutic approach
Evgeniia Rusina & Massimo Mantegazza, CNRS and University Côte d’Azur
Targeting GABA switch rescues sociability and cognition in a Scn1a+/- mouse model of Dravet syndrome
Isabelle Léna, University Côte d’Azur, Institute of Molecular and Cellular Pharmacology (IPMC)
A workflow for rare disease drug discovery using machine-readable pathways
Friederike Ehrhart, Maastricht University
The added value of patient collaboration in research and development
Rob Pleticha, admedicum
11.30 – 12.30
Workshop 2: Advanced Therapy Medicinal Products Approaches for Dravet Syndrome
Introduction to advanced therapy medicinal products approaches for Dravet syndrome
Vania Broccoli, San Raffaele Scientific Institute
Dynamic group discussions on advanced therapy medicinal products approaches for Dravet syndrome
All attendees
Pooling of ideas & Conclusions
EDSAT Group leaders
12.30 – 13.30
Networking Lunch
13.30 – 14.30
Expert Panel: Moving from the lab to the clinic
César Hernández, Spanish Medicines Agency
Danielle Andrade, University of Toronto
Franck Kalume, University of Washington
Javier Avendaño, Stoke Therapeutics
Lieven Lagae, KU Leuven
Salvador Rico, Encoded Therapeutics
14.30 – 15.00
Networking Coffee Break
15.00 – 15.30
Research Talk Session III
Temporal manipulation of Scn1a gene reveals its essential role in postdevelopmental age
Linda Serra, San Raffaele Hospital
Scn1a gene reactivation after symptoms onset rescues seizures, behavioural deficits and altered gene
Simone Brusco, Istituto Di Neuroscienze – CNR
Adenovirus-mediated expression of NaV1.1 ameliorates Dravet syndrome epilepsy in mice
Saja Fadila, Tel Aviv University
15.30 – 15.35
Young Investigator Award, Sponsored by Encoded
José Ángel Aibar, Fundación Síndrome de Dravet
15.35 – 15.40
Close & thank-yous
José Ángel Aibar, Fundación Síndrome de Dravet
Venue
The Dravet Syndrome Conference 2022 will take place at the Gregorio Marañón lecture hall of the Illustrious Official College of Physicians of Madrid (Spain). The venue is located at Calle de Santa Isabel, 51, in the heart of the city and less than 5-minute walk away from Paseo del Prado and Atocha station.
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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 research@dravetfoundation.eu.
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 research@dravetfoundation.eu 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:
13th22nd of February 2022 at 23:59 CET. - Email notification of Selected speakers: 1st of March 2022.
- Reception of final presentation deadline: 27th of March 2022 at 23:59 CET.
- Conference Date: 1st of April 2022.
ABSTRACT SUBMISSION GUIDELINES
Abstracts may be selected for short (8 minutes of presentation plus 2 minutes for discussion) or flash (3 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 Dravet Syndrome Advanced Therapies European Working Group (DS ATEWG). The DS ATEWG 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 (10 minutes) or flash talk (5 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 research@dravetfoundation.eu.
ABSTRACT AND TRAVEL GRANT SUBMISSION FORM
Become a sponsor
This Networking event has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575.
To learn about the EDSAT2022 sponsoring options, contact us at fundraising@dravetfoundation.eu or by phone at +34 722 307 252.
Sponsors
More coming soon!
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 2022, that will take place on next 31st of March 2022 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: 2 de abril de 2022 en Madrid
Tras unos meses donde la pandemia nos lo ha hecho imposible, la Fundación Síndrome de Dravet ya está preparando con mucha ilusión la Reunión Anual de Familias 2022, 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 permitirá también tener la oportunidad de encontrarnos e interactuar con otras familias que viven con la misma enfermedad e intercambiar experiencias, preocupaciones y esperanzas.
Un año más, la volveremos a realizar en Madrid, más concretamente el sábado 2 de abril de 2022 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 domingo 27 de febrero martes 1 de marzo de 2022 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 dos 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 para los niños Dravet y sus hermanos. Además, también contaremos con un servicio de ambulancia y personal médico en el caso de que sea necesario. Nos aseguraremos también de que se cumplan todas las medidas sanitarias necesarias y proveeremos a todos los asistentes con un test de antígenos rápido COVID-19.
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.
¡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 – 10.25
La Fundación Síndrome de Dravet en tiempos de pandemia
José Ángel Aibar, Fundación Síndrome de Dravet
10.25 – 10.50
Investigación: Fármacos en camino
Elena Cardenal, Fundación Síndrome de Dravet
10.50 – 11.00
Nuevo proyecto: Fortalezas y dificultades en familias con síndrome de Dravet
Itziar Alonso-Arbiol, Universidad del País Vasco
11.00 – 11.20
Descanso
11.20 – 11.50
La historia de estiripentol para el síndrome de Dravet
Susana Boronat, Hospital de la Santa Creu i Sant Pau
11.50 – 12.20
La historia de cannabidiol para el síndrome de Dravet
Víctor Soto, Hospital Infantil Universitario Niño Jesús
12.20 – 13.00
La historia de fenfluramina para el síndrome de Dravet
Lieven Lagae, KU Leuven
13.00 – 13.30
Actualización clínica de STK-001 para el tratamiento del síndrome de Dravet
Javier Avendaño, Stoke Therapeutics
13.30 – 14.00
Actualización clínica de ETX101 para el tratamiento del síndrome de Dravet
Salvador Rico, Encoded Therapeutics
14.00 – 15.30
Comida
15.30 – 16.00
Primeros auxilios: Reanimación cardiopulmonar
Julián Lara, Hospital Universitario Puerta de Hierro
16.00 – 16.30
Implicaciones odontológicas en el síndrome de Dravet
Irene María González Aroca
16.30 – 17.00
Nueva ley de apoyo a las personas con discapacidad
Bosco García de Viedma, Ramón C. Pelayo Abogados
17.00 – 17.30
Programa Pequeño Deseo
Cristina Pozo, Fundación Pequeño Deseo
17.30 – 18.00
Speed Networking
18.00 – 18.40
Cómo mejorar la resiliencia
Sergio Saiz, Coach de Vida
18.40 – 18.50
Premios Dravet 2022
José Ángel Aibar, Fundación Síndrome de Dravet
18.50 – 19.00
Clausura del encuentro
José Ángel Aibar, Fundación Síndrome de Dravet
Lugar del encuentro
La Reunión Anual de Familias 2022 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 fundraising@dravetfoundation.eu e infórmese de las diversas opciones de patrocinio.
Patrocinadores
Platinum sponsorship
Gold sponsorship
¡En breve!
Silver sponsorship
Bronze sponsorship
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 2022 de la Fundación Síndrome de Dravet, que tendrá lugar el próximo 2 de abril de 2022 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.
