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Fondo de Solidaridad 2022

Introducción

La Fundación Síndrome de Dravet lanza su 4ª convocatoria de ayudas destinada a favorecer 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.

Por tanto, un año más, junto con el resto de programas sociales y familiares de la Fundación Síndrome de Dravet, seguimos asignando una concesión de ayudas a las familias, en un intento de aportar nuestro grano de arena y mitigar los efectos en las economías de nuestras familias.

Coste de paciente Dravet a la familia
Foto guerrera Dravet

Plazos

Solicitud del 25/04/2022 al 15/08/2022
Aceptación del 25/04/2022 al 31/08/2022
Justificación del 01/09/2022 al 30/09/2022
Pago del 01/10/2022 al 15/10/2022

Ayuda

Las ayudas están destinadas a cubrir en todo o en parte aquellos gastos realizados por las familias entre el 1 de enero y el 30 de septiembre de 2022, que pertenezcan a una de las siguientes categorías

  • Permitir el acceso a cualquier tipo de ocio para personas con síndrome de Dravet:
    • Licencia o adhesión a un club deportivo o cultural
    • Juegos educativos tipo Hoptoys
    • Libros
  • Articulos específicos y adaptados no cubiertos:
    • Artículos de ocio como bicicletas adaptadas, patinetes, etc.
    • Termómetros, pulsioxímetros, etc.
  • Tratamientos o terapias no cubiertas:
    • Tratamientos odontológicos
    • Terapias de apoyo como fisioterapia, logopedia, psicología, terapias alternativas
  • Ayudas a centros de ocio para personas con síndrome de Dravet:
    • Actividades de ocio inclusivo

La Fundación Síndrome de Dravet establece ayudas de hasta un máximo de 200 euros por cada familia con hijo Dravet. Se podrán aportar tantas facturas como se tenga hasta cubrir los 200 euros de beca máximos y por cada familia solo se podrá presentar una única solicitud.

Foto guerrero Dravet
Foto guerrero Dravet1

Requisitos

– La ayuda se deberá destinar a un paciente con síndrome de Dravet.
– Se deberá estar adherido a la Fundación Síndrome de Dravet.
– Se deberá estar al día en la cuota de los últimos dos años de adhesión (año actual y año anterior), con excepción de aquellas familias que se hayan adherido a la Fundación Síndrome de Dravet durante el 2022, que deberán estar al día en la cuota del año en curso.

Si cumples con los requisitos para aplicar al Fondo de Solidaridad 2022 de la Fundación Síndrome de Dravet, puedes cumplimentar este formulario para solicitar la concesión de ayudas dentro de la cuantía establecida en las bases del Fondo de Solidaridad 2022.

    Nombre del paciente Dravet para el que se solicita la ayuda *

    Apellidos del paciente Dravet para el que se solicita la ayuda *

    Lugar de nacimiento *

    Fecha de nacimiento *

    Objeto de la ayuda *

    Breve descripción del proyecto al que se destinará la ayuda *

    Importe de la ayuda solicitada (en euros – máximo 200 euros) *

    Comprobante transferencia del pago de la cuota de 2021
    (no necesario para aquellas familias que se hayan adherido a la Fundación Síndrome de Dravet en el transcurso del 2021)

    Comprobante transferencia del pago de la cuota de 2022
    (si no se ha satisfecho aun la cuota anual de 2022, se deberá realizar antes de solicitar el pago de la ayuda)

    Nombre de la persona que solicita la ayuda *

    Apellidos de la persona que solicita la ayuda *

    Teléfono de contacto (sin espacios) *

    Email de contacto *

    Una vez se haya hecho la solicitud al Fondo de Solidaridad 2022, se haya aprobado por la Fundación Síndrome de Dravet y se haya realizado el gasto previsto, se podrá cumplimentar este formulario para solicitar el reembolso de los gastos aprobados, siempre dentro de las cuantía que establece las bases del Fondo de Solidaridad 2022.

      Identificador de la solicitud (sin espacios) *

      Nombre del paciente Dravet para el que se ha solicitado la ayuda *

      Apellidos del paciente Dravet para el que se ha solicitado la ayuda *

      Objeto de la ayuda *

      Importe de la ayuda solicitada (en euros – máximo 200 euros) *

      IBAN de la cuenta bancaria en la que se ha de efectuar el reembolso *

      Nombre y apellidos del titular de la cuenta bancaria *

      1- Recibo/factura1 del gasto efectuado *

      1- Comprobante de pago del recibo/factura1 *

      2- Recibo/factura2 del gasto efectuado

      2- Comprobante de pago del recibo/factura2

      3- Recibo/factura3 del gasto efectuado

      3- Comprobante de pago del recibo/factura3

      3- Recibo/factura4 del gasto efectuado

      4- Comprobante de pago del recibo/factura4

      5- Recibo/factura5 del gasto efectuado

      5- Comprobante de pago del recibo/factura5

      6- Recibo/factura6 del gasto efectuado

      6- Comprobante de pago del recibo/factura6

      Nombre de la persona que ha solicitado la ayuda *

      Apellidos de la persona que ha solicitado la ayuda *

      Teléfono de contacto (sin espacios) *

      Email de contacto *

      ¡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.