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¿Qué es el síndrome de Dravet?

El síndrome de Dravet, también conocido como Epilepsia Mioclónica Severa de la Infancia, es una forma rara y catastrófica de epilepsia intratable que comienza en el primer año de vida, con una incidencia estimada de 1 cada 16.000 nacimientos.

Familias

Encuentre los recursos que se han creado para las familias de niños o adultos que han sido diagnosticados o todavía están pendientes de ser diagnosticados con Síndrome de Dravet. Averigüe cómo puede ayudarnos a ayudarle.

Profesionales

Aprende sobre el síndrome de Dravet y cómo afecta a niños, adultos y sus familias, así como sus últimos estudios y conocimientos científicos. Esta sección es adecuada para los profesionales relacionados con el síndrome de Dravet.

Colaboradores

¿Quieres ayudarnos en la lucha contra esta enfermedad rara? Ponemos a tu disposición numerosas formas para aportar tu granito de arena, ya seas una empresa, una persona particular o un voluntario.

Hemos recopilado seminarios educativos en línea de la Fundación Síndrome de Dravet, en los que se revisan y discuten diversos temas actuales y relevantes para pacientes y familias con síndrome de Dravet.

Lea . recientes

Concurso de Dibujo Dravet
Concurso de Dibujo Dravet

Para conmemorar el Día Internacional del Síndrome de Dravet, desde la Fundación Síndrome de Dravet España hemos decidido celebrar un concurso de dibujo. ¡Y puedes ganar grandes premios! 🏆

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Presentación del documento Aportaciones para una Estrategia en Terapia Génica para el Sistema Nacional de Salud
Participamos ena la presentación del documento “Aportaciones para una Estrategia en Terapia Génica para el Sistema Nacional de Salud”

Hoy hemos asistido a la presentación del documento “Aportaciones para una Estrategia en Terapia Génica para el Sistema Nacional de Salud”

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Dravet Syndrome Conference 2022
Resumen: Dravet Syndrome Conference 2022

Resumen de la Dravet Syndrome Conference 2022, que tuvo lugar el pasado 31 de marzo, reuniendo a numerosos expertos internacionales, incluyendo médicos, investigadores y profesionales de la industria farmacéutica.

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DNA
Aportaciones para una Estrategia en Terapia Génica para el Sistema Nacional de Salud

El próximo miércoles 04 de mayo participaremos en la mesa redonda impulsada por Pfizer para presentar el documento …

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Solidaridad Ucrania
La Fundación Síndrome de Dravet con el pueblo ucraniano

Desde la Fundación de Síndrome de Dravet aportamos nuestro granito de arena y ayudamos a aquellas personas y familias ucranianas con síndrome de Dravet y enfermedades relacionadas.

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Resolución ONU
La primera Resolución de la ONU sobre personas con enfermedades raras allana el camino para el Plan de Acción Europeo para las Enfermedades Raras

Si solo hay un paciente que padece una enfermedad, eso todavía significa que todos la padecemos. Invirtamos en comprendernos mejor a nosotros mismos y vencer las enfermedades raras.

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Skyline study
Nuevo ensayo clínico Skyline de fase 3 para soticlestato (TAK-935)

El ensayo clínico en fase 3 que se está llevando a cabo en España con el fármaco soticlestato (TAK-935) sigue desarrollándose satisfactoriamente y reclutando nuevos pacientes.

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Manifestaciones psiquiátricas
Manejo de las manifestaciones psiquiátricas en el síndrome de Dravet

En enfermedades como el síndrome de Dravet es igual de importante controlar las crisis epilépticas como abordar y evaluar las comorbilidades asociadas, de ahí la necesidad de un enfoque multidisciplinar en los tratamientos de estas patologías. Aprende más en este artículo.

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Hermanas
La ansiedad de los hermanos de una persona con síndrome de Dravet

Addi, mi hija de 13 años estaba de camino a casa en el autobús escolar la semana pasada cuando me envió el mensaje. Estaba confusa, pero le aseguré que su hermana de 6 años, que tiene síndrome de Dravet, estaba bien.

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EDSAT meetings
Últimas reuniones del Grupo Europeo de Trabajo en Terapias Avanzadas para el Síndrome de Dravet

El Grupo Europeo de Trabajo en Terapias Avanzadas para el Síndrome de Dravet sigue en activo durante este 2022. ¡Y lo hace más que nunca!

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Miembro orgulloso de:

¡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

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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 research@dravetfoundation.eu.

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 research@dravetfoundation.eu 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 research@dravetfoundation.eu 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 research@dravetfoundation.eu. 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 research@dravetfoundation.eu.

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 research@dravetfoundation.eu 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 research@dravetfoundation.eu 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 research@dravetfoundation.eu. 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.