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Programas y Proyectos

Proyecto Siempre Alerta

Proyecto Siempre Alerta

Vamos a proveer a todas nuestras familias con un termómetro dígital clínico sin contacto, un dispositivo fiable para la ayuda en el control de la enfermedad, reduciendo potencialmente la carga de estrés que los cuidadores ya tenemos que soportar de por sí.

Proyecto Pequeño Deseo

Una iniciativa que surge a través un acuerdo de colaboración entre la Fundación Síndrome de Dravet y la Fundación Pequeño Deseo, cuyo objetivo es lograr que niños de entre 6 y 18 años sin cumplir que sufren el síndorme de Dravet puedan ver cumplidos sus sueños e ilusiones con el fin de apoyarles anímicamente y alejarles temporalmente de la enfermedad.

Duerme Tranquilo

Proyecto Duerme Tranquilo

Aunque estemos en tiempos convulsos, no dejamos de trabajar por el bienestar y la mejora de la calidad de vida de todos nuestros guerreros y sus familias y, por ello, tenemos el placer de presentaros el proyecto “Duerme tranquilo”.

Proyecto Estoy Aquí

Proyecto Estoy Aquí

Los pacientes con síndrome de Dravet están generalmente afectados por un importante retraso cognitivo y dificultades en el habla que les impide ser capaces de comunicarse y actuar en situaciones que se pueden dar en la vida cotidiana. Como, por ejemplo, si se pierden no son capaces de pedir ayuda, de expresarse de forma adecuada para facilitar información sobre los nombres o teléfonos de sus padres, dónde está su domicilio, etc.

Coste de paciente Dravet a la familia

Fondo de Solidaridad

La Fundación Síndrome de Dravet lanza la segunda convocatoria de ayudas destinadas a favorecer específicamente a las familias con un hijo con síndrome de Dravet. Estos pacientes, además de medicación, requieren la aplicación de otras técnicas sanitarias, así como servicios de rehabilitación complementarios, apoyo psicológico, desplazamientos y ayudas técnicas y materiales, que quedan fuera del sistema sanitario o cuya cobertura por la Seguridad Social no responde a la urgencia y necesidad con la que pueden llegar a encontrarse muchas familias. Problemas que, además, se van a ver agravados por la situación económica tan complicada producida a raíz de la COVID-19.

Dravet

Programa de Atención Psicosocial a hermanos de personas con Síndrome de Dravet

Con el objetivo de mejorar la calidad de vida de las familias que formamos parte de la Fundación Síndrome de Dravet y tras las peticiones de algunas familias, el Patronato de la Fundación Síndrome de Dravet quiere poner en marcha el Programa de Atención Psicosocial a hermanos de personas con Síndrome de Dravet.

Programa WGS

Programa de Secuenciación Completa del Genoma

Gracias al Programa de Secuenciación Completa del Genoma, la Fundación Síndrome de Dravet ofrece un test genómico a pacientes residentes en España no diagnosticados de cualquier edad que presenten un cuadro clínico compatible con síndrome de Dravet.

Este programa solo es accesible a los pacientes que estén atendidos por médicos y especialistas de los centros y hospitales públicos del Sistema Nacional de Salud español.

La secuenciación completa del genoma podría ser clave para la obtención del diagnóstico final del paciente. Un diagnóstico correcto evitará pruebas innecesarias y facilitará el tratamiento adecuado del paciente, lo cual supondrá una mejora de valor incalculable de su calidad de vida y la de toda la familia. Cuanto antes se consiga el diagnóstico, antes podrá aplicarse el tratamiento adecuado, lo cual podría alterar de manera positiva el rumbo de la enfermedad.

Programa de Respiro Familiar

Programa de Respiro Familiar

Dentro del plan de acción social de la Fundación y su apoyo a las familias con síndrome de Dravet, la Fundación Síndrome de Dravet puso en marcha el pasado año 2019 el inicio del Programa de Respiro Familiar, que consiste en estancias cortas temporales en las que la Fundación proveerá de un servicio de cuidadores para los niños y actividades de ocio (sin los niños) para los adultos.

El objetivo de esta acción es apoyar al núcleo familiar, a los padres, para que puedan realizar algunas actividades juntos y disfrutar de ellas.

colorear_page-0001

Coloreando en casa: #YoMeQuedoEnCasa

Desde la Fundación Síndrome de Dravet pensamos en los más pequeños (y también en los no tantos) de la casa en estos días en los que todos hemos de quedarnos estrictamente confinados en casa para hacer frente a la COVID-19.

Por ello, lanzamos esta iniciativa para que los niños y niñas puedan pasar estos días lo más ameno posible, jugando con una serie de láminas que deberán colorear.

Creemos que este tipo de esta iniciativas son esenciales en estos tiempos, para que los peques comprendan la importancia de estar en casa, además de fomentar la creatividad de los más pequeños y conseguir un trabajo cohesionado con los demás miembros de la unidad familiar.

Además, todos los que nos enviéis vuestras láminas coloreadas (no tienen que ser todas) a info@retodravet.com entraréis en un sorteo solidario de 3 packs de productos solidarios RetoDravet, que se realizará una vez se levante el estado de alarma.

También publicaremos y les daremos visibilidad a través de nuestras redes sociales a las láminas que vayamos recibiendo.

Muchas gracias a Tomás Cano, a GARBI KW, a Caras Raras, a Miguel Ángel Pérez Manzaneque y a todos los artistas por su colaboración.

¡Anímate y únete a esta actividad solidaria!

¡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 be not 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 sessions and visual presentations. The conference registration includes all coffee breaks, lunch breaks, and conference documentation with all information about the event. The registration does not comprise travelling, accommodation costs or any other personal expenses.

The conference registration includes: Attendance to all sessions, oral sessions and visual presentations. The conference registration includes all coffee breaks, lunch breaks, and conference documentation with all information about the event. The registration does not include travel or 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 1st of April at 8:30 a.m. Upon registration at the registration desk, 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, lunch and coffee breaks.

 

Cancellation Conditions

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, 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 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.

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’s activities. The conference booklet online and in print will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. 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.

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 be not 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 sessions and visual presentations. The conference registration includes all coffee breaks, lunch breaks, and conference documentation with all information about the event. The registration does not comprise travelling, accommodation costs or any other personal expenses.

The conference registration includes: Attendance to all sessions, oral sessions and visual presentations. The conference registration includes all coffee breaks, lunch breaks, and conference documentation with all information about the event. The registration does not include travel or 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 at the registration desk, 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, lunch and coffee breaks. 

Cancellation Conditions
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, 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 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.

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’s activities. The conference booklet online and in print will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. 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.

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.