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Proyecto Estoy Aquí

¿Qué es el proyecto "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.

Por su patología, también requieren ser atendidos de una forma muy específica en el caso de una crisis epiléptica, de una forma muy individualizada porque cada persona con síndrome de Dravet toma una combinación de fármacos diferente. Y puede darse la situación de que los padres no estén con ellos en el momento de sufrir una crisis o durante cualquier situación imprevista.

En estos casos, tenemos que recurrir a la creatividad y buscar artículos o dispositivos que nos ayuden y sean la voz de nuestros hijos, como es el caso de un producto que queremos poner a disposición de todas las familias de la Fundación Síndrome de Dravet: una chapa y un llavero inteligentes con tecnología QR NFC GPS.

Proyecto Estoy Aquí

Es un artículo que no precisa la instalación de ninguna aplicación en el móvil de los padres ni requiere el uso de pilas o baterías, pero a través del cual se podrá almacenar la información esencial y necesaria para el paciente con síndrome de Dravet.

Si el niño se pierde o necesita asistencia, cualquier persona o agente público podrá contactar rápidamente con los padres, con el simple gesto de escanear con su móvil el código QR o NFC o el teclear online el código impreso en la chapa o llavero. Al hacerlo, enlazará con los datos de contacto de los padres para que se les pueda avisar. También pueden indicarse datos médicos, medicación que está tomando, centro hospitalario de referencia, etc. Y lo más importante, se podrá informar brevemente del protocolo de actuación en caso de emergencia.

Dispone también de un sistema de geolocalización GPS, por lo que los padres recibirán un correo electrónico con las coordenadas GPS y la ubicación de dónde se encuentra el niño. Será muy fácil de configurar por las familias, se podrá colocar en la ropa, en la mochila, etc., y creemos que será una solución muy útil para los pacientes y familias con síndrome de Dravet. Si eres familia de la Fundación Síndrome de Dravet, solo tendrás que rellenar el formulario de abajo con tus datos para poder recibir de manera totalmente gratuita una chapa y un llavero inteligentes con tecnología QR NFC GPS.

Agradecemos a Sigaus, a la Caixabank de Noáin y la Dirección Territorial de Navarra de Caixabank su apoyo para hacer posible este proyecto.

Formulario De Solicitud

    Nombre del paciente Dravet para el que se solicita *

    Apellidos del paciente Dravet para el que se solicita *

    Nombre de la persona que solicita la ayuda *

    Apellidos de la persona que solicita la ayuda *

    Línea 1 de la dirección *

    Línea 2 de la dirección

    Ciudad *

    Código postal *

    Provincia

    ¿Alguna indicación adicional para esta dirección?

    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 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.