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23 de junio, Día Internacional del Síndrome de Dravet

Numerosos edificios y monumentos emblemáticos de nuestro país, de morado por el síndrome de Dravet

Infografia-Dravet-cuadrada

–  Este jueves se conmemora el Día Internacional del Síndrome de Dravet, que tiene el objetivo de dar visibilidad a esta epilepsia catastrófica de la infancia.

– El síndrome de Dravet comienza en el primer año de vida en bebés hasta entonces sanos y provoca una serie de trastornos graves del neurodesarrollo, incluyendo una alta tasa de mortalidad prematura.

–  La Fuente de Cibeles, el Parlamento de Navarra o el Ayuntamiento de Valencia son algunos de los monumentos y edificios emblemáticas que se iluminan de morado este jueves.

Madrid, 23 de junio de 2022.- Numerosos edificios y monumentos emblemáticos distribuidos por toda la geografía nacional se iluminarán de morado este jueves para concienciar sobre el síndrome de Dravet, que celebra la novena edición del Día Internacional del Síndrome de Dravet. Así y entre más de una centena, la Fuente de Cibeles en Madrid, el Ayuntamiento de Valencia, la Universidad de Salamanca o los Parlamentos de Cantabria, Aragón, Navarra o País Vasco darán visibilidad a esta enfermedad rara que tiene una incidencia estimada de 1 cada 16.000 nacimientos. 

El síndrome de Dravet, también llamado epilepsia mioclónica severa de la infancia, es una enfermedad rara, grave, crónica y severa que tiene una tasa de mortalidad prematura de alrededor del 15 por ciento. Se origina por la mutación de un gen, el SCN1A, y comienza a manifestarse en el primer año de vida de bebés hasta entonces sanos, con crisis epilépticas desencadenadas por fiebre seguida de una epilepsia resistente a los fármacos. Además, a partir del segundo año de vida, ocasiona graves retrasos cognitivos, motores y del habla, así como problemas conductuales y alto riesgo de mortalidad prematura.

Según explica José Ángel Aibar, presidente de la Fundación Síndrome de Dravet, “según nuestros últimos estudios, en nuestro país hay una tasa de infradiagnóstico de más del 75 por ciento, y esto hace que estas personas sin el diagnóstico correcto se vean expuestas a fármacos antiepilépticos contraindicados y puedan llegar a ver sus síntomas exacerbados, incluyendo un riesgo mayor de fallecimiento prematuro”.

“Por tanto, estamos seguros de que la iluminación de todos estos edificios y monumentos emblemáticos nos ayudará enormemente en nuestro objetivo de concienciar sobre el síndrome de Dravet y llegar a ayudar en última instancia a las personas y familias que conviven con esta enfermedad rara que actualmente no tiene cura”.

Campaña Dorsal Solidario 2022

Con el objetivo de dar aún más visibilidad a esta patología, RetoDravet, la plataforma de promoción y difusión a través del deporte solidario y otros eventos culturales y sociales de la Fundación Síndrome de Dravet, tiene en marcha la campaña “Dorsal Solidario 2022”, a través de la cual se pretende unir deporte y solidaridad con el objetivo de concienciar y recaudar fondos para la investigación de esta enfermedad rara.

Para participar en esta campaña, desde RetoDravet se solicita descargarse el dorsal solidario personalizado en dorsal.retodravet.com y compartirlo en redes sociales con fotografías corriendo, paseando, caminando o practicando cualquier modalidad deportiva.

Además, se podrá asistir a alguna de las quedadas presenciales que RetoDravet está llevando a cabo con motivo del Día Internacional del Síndrome de Dravet, y que se tendrán lugar en varias ciudades de nuestro país, como Madrid, Valencia, Sevilla, San Sebastián o Jumilla.

Sobre el síndrome de Dravet

El síndrome de Dravet, también llamado epilepsia mioclónica severa de la infancia, afecta a uno de cada 16.000 nacimientos, por lo que se considera una enfermedad rara, y tiene una tasa de mortalidad de alrededor del 15 por ciento. Se origina por la mutación de un gen, el SCN1A, y comienza a manifestarse en el primer año de vida del niño, con crisis desencadenadas por fiebre seguida de una epilepsia resistente a los fármacos. Además, ocasiona graves retrasos cognitivos, motores y del habla, así como problemas conductuales y alto riesgo de mortalidad prematura.

Sobre Fundación Síndrome de Dravet

La Fundación Síndrome de Dravet, organización global en la defensa y representación de los pacientes y familias con esta patología, fue creada en 2011 por un grupo de padres con niños afectados por esta enfermedad rara. Su objetivo principal es el de promover y garantizar el desarrollo de la investigación en el entorno de este síndrome para conseguir avanzar en el conocimiento de sus causas, mejorar su diagnóstico y hallar fármacos y tratamientos efectivos que permitan mitigar e incluso eliminar las consecuencias de la enfermedad.

Para ampliar información y gestión de entrevistas:

Departamento de Comunicación
comunicacion@dravetfoundation.eu
+34 691 41 61 15

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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.