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Servicio de Apoyo Integral para Personas y Familias con Síndrome de Dravet

En la Fundación Síndrome de Dravet comprendemos que el diagnóstico y manejo de esta enfermedad rara pueden generar incertidumbre, estrés y grandes desafíos emocionales, legales y prácticos para las familias.

El manejo de esta condición no solo implica desafíos médicos, sino también un impacto significativo en el bienestar emocional, legal y práctico de quienes la padecen y sus seres queridos. Conscientes de estas dificultades, hemos desarrollado un programa de apoyo integral que se enfoca en brindar acompañamiento constante, información detallada y asesoría personalizada en múltiples áreas.

Nuestro objetivo principal es mejorar la calidad de vida de las personas y familias con síndrome de Dravet. Por ello, hemos diseñado un programa de apoyo integral que ofrece acompañamiento, información y asesoría personalizada en diversos ámbitos, con el objetivo de mejorar la calidad de vida tanto de las personas afectadas como de sus familias. Además, promovemos una mayor comprensión del síndrome y facilitamos el acceso a los recursos necesarios para su manejo, trabajando para que las familias se sientan apoyadas y comprendidas en cada paso de su camino.

Dravet

Servicio de Información y Orientación

Proporcionamos información clara y actualizada sobre el síndrome de Dravet, así como recursos de diferente índole, con el objetivo de empoderar a las personas y familias con síndrome de Dravet y facilitar el manejo diario de la enfermedad.

Servicio de Atención Psicosocial

Ofrecemos apoyo psicosocial personalizado para ayudar a las familias a gestionar los desafíos que supone convivir con el síndrome de Dravet, proporcionando un espacio seguro para expresar sus preocupaciones y obtener herramientas útiles.

Servicio de Orientación Jurídica

Brindamos asesoramiento legal especializado para garantizar la protección y defensa de los derechos de las personas y familias con síndrome de Dravet, cubriendo aspectos tales como los educativos, laborales y de prestaciones sociales.

¡Conoce todos los detalles sobre cada servicio!

El Servicio de Información y Orientación tiene el objetivo de proporcionar a las familias información clara, actualizada y comprensible sobre el síndrome de Dravet, desde el diagnóstico hasta las diferentes etapas de la vida de la persona afectada . Este servicio busca empoderar a las familias, facilitándoles los recursos necesarios para enfrentar los retos diarios en ámbitos médicos, educativos y sociales.

¿Qué ofrecemos?

  • Información científico-médica actualizada:
    Proporcionamos recursos sobre diagnóstico, síntomas, evolución y tratamientos del síndrome de Dravet, basados en los últimos avances médicos y científicos. Facilitamos guías comprensibles elaboradas por profesionales especializados.
  • Recursos educativos adaptados:
    Ofrecemos orientación sobre las etapas de escolarización, asesorando sobre opciones de educación especial, recursos pedagógicos y adaptaciones curriculares para menores con síndrome de Dravet.
  • Orientación sobre derechos y prestaciones:
    Ayudamos a las familias a comprender y acceder a las prestaciones sociales, ayudas económicas y servicios públicos a los que tienen derecho. Asesoramos en temas como discapacidad, dependencia, ayudas para la educación y el transporte, mejorando así su calidad de vida.
  • Apoyo en la gestión de trámites administrativos:
    Orientamos a las familias que lo precisen en la preparación de la documentación necesaria para solicitar prestaciones, para acceder a recursos específicos, etc, asegurándonos de que estén informados sobre sus derechos y los procedimientos que deben seguir.

El Servicio de Atención Psicosocial tiene el objetivo de ofrecer apoyo emocional y psicosocial a las familias afectadas, ayudándoles a gestionar los desafíos de convivir con una enfermedad crónica y compleja. Nuestro equipo proporciona un espacio seguro donde las familias pueden expresar sus preocupaciones y obtener herramientas para enfrentar los momentos difíciles.

¿Qué ofrecemos?

  • Asesoramiento psicosocial individualizado:
    Las familias pueden acceder a sesiones individuales donde se abordan los problemas emocionales relacionados con el cuidado de un familiar con síndrome de Dravet, brindando un enfoque personalizado que considera las dinámicas y necesidades de cada miembro.
  • Acompañamiento en crisis:
    En situaciones complejas derivadas del diagnóstico o manejo del síndrome, nuestro equipo está disponible para ofrecer orientación y apoyo inmediato, ayudando a las familias a gestionar el impacto emocional y facilitar la toma de decisiones.
  • Grupos de ayuda mutua:
    Organizamos reuniones regulares donde las familias pueden compartir experiencias, preocupaciones y avances con otras en situaciones similares. Estos grupos crean un ambiente de confianza, reducen el aislamiento social y fortalecen el bienestar emocional.
  • Talleres y charlas sobre bienestar emocional:
    A lo largo del año, ofrecemos talleres sobre manejo del estrés, autocuidado y bienestar emocional para los cuidadores, con el fin de proporcionar herramientas prácticas para mejorar su calidad de vida y la de sus familiares.

El Servicio de Orientación Jurídica tiene el obejtivo de ofrecer asesoramiento legal especializado a las familias para garantizar la protección y defensa de los derechos de las personas afectadas por el síndrome de Dravet. Este servicio cubre temas clave como medidas de apoyo a la capacidad jurídica, acceso a prestaciones y defensa de derechos en los ámbitos educativo y laboral.

¿Qué ofrecemos?

  • Asesoramiento sobre medidas de apoyo judicial:
    Proporcionamos orientación sobre procedimientos legales y medidas judiciales de apoyo que garanticen la protección adecuada de los pacientes, ayudando a las familias a entender los procesos y pasos a seguir.
  • Orientación en el acceso a prestaciones por discapacidad y dependencia:
    Explicamos cómo acceder a prestaciones como la prestación por cuidado de menores con enfermedad grave (CUME), ayudas por discapacidad y dependencia, y otros beneficios. También asesoramos en casos de denegación o problemas con las solicitudes.
  • Apoyo en temas educativos y laborales:
    Asesoramos a las familias sobre los derechos de los menores en el ámbito educativo, incluyendo la defensa en situaciones de escolarización, adaptación curricular y acceso a centros de educación especial. También informamos sobre los derechos laborales de los cuidadores, como permisos y reducciones de jornada.
  • Asesoramiento en casos legales relacionados con el síndrome de Dravet:
    En casos de juicios o litigios relacionados con el cuidado o derechos de las personas afectadas, nuestro equipo jurídico ofrece asesoría legal.

Solicita tu servicio a través del siguiente formulario

    DATOS DE CONTACTO

    Nombre y apellidos:

    Correo electrónico:

    Teléfono móvil:

    ¿Eres familia miembro de la Fundación Síndrome de Dravet?

    ¿Estás al día de tu cuota anual?

    Para que podamos gestionar tu solicitud, date entonces de alta en ESTE ENLACE

    Adjunta el recibo del pago de tu última cuota anual, ya sea del último año o del año en curso:

    INFORMACIÓN DE LA PERSONA CON SÍNDROME DE DRAVET

    Nombre y apellidos de la persona con síndrome de Dravet:

    Edad de la persona con síndrome de Dravet:

    Relación con la persona afectada:

    Dirección de residencia

    Línea 1 de la dirección *

    Línea 2 de la dirección

    Ciudad *

    Código postal *

    Provincia

    País *

    DETALLES DEL SERVICIO SOLICITADO

    Servicio solicitado:

    Descripción de la solicitud:

    Comentarios adicionales:

    Adjunte cualquier archivo que considere de interés:


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    TERMS & CONDITIONS

    The Dravet Syndrome Conference 2023 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 Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Thursday 23rd of March 2023. 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 [email protected].

    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 Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 23rd 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 [email protected] 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 [email protected] before 16th of March 2023. 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 [email protected]. 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 European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2023 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 Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Friday 24th of March 2023. 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 [email protected].

    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 Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 24th 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 [email protected] 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 [email protected] before 17th of March 2023. 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 [email protected]. 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 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 [email protected].

    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 [email protected] 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 [email protected] 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 [email protected]. 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 [email protected].

    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 [email protected] 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 [email protected] 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 [email protected]. 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.