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Resumen de fármacos en camino (fin de 2021) para familias

(VER DOCUMENTO AL FINAL DE LA PÁGINA)

Estimado amigo,

Aunque esta noche sea Nochebuena y mañana Navidad, desde la Fundación Síndrome de Dravet seguimos trabajando sin descanso para mejorar la calidad de vida de las personas y las familias con síndrome de Dravet.

Semanas antes de que la OMS declarase oficialmente la pandemia, concretamente el 23 de enero de 2020, ya informábamos en nuestras redes sociales sobre el coronavirus. Desafortunadamente, este año 2021 la pandemia ha continuado y no ha cesado. Sin embargo, ello no ha evitado que desde la Fundación Síndrome de Dravet volvamos a tener otro año realmente activo.

Desde el área científica hemos concedido becas a numerosos equipos de investigación, incluyendo CIMA Universidad de Navarra, Universidad de Melbourne, Unidad de Genética del Hospital La Fe, Universidad de Tel Aviv, Hospital Sant Pau de Barcelona o al Centro Nacional para la Investigación Científica de Francia. Además, también hemos iniciado una amplia serie de proyectos de investigación propios, incluyendo la publicación de una guía actualizada que culmina con un nuevo algoritmo de tratamiento para el síndrome de Dravet a través de un consenso europeo en el que participaron 29 expertos clínicos europeos en el síndrome de Dravet.

Desde el área social no nos hemos quedado atrás. A través del Proyecto Protégete hemos equipado a nuestras familias con más de 50 mil mascarillas FFP2. Por una parte, para asegurarnos de la protección máxima de las personas y cuidadores Dravet, pero también para ayudar a la ya impactada economía familiar. También hemos equipado a nuestras familias con termómetros clínicos sin contacto, como parte del Proyecto Siempre Alerta. Otro proyecto social relevante que hemos puesto en marcha en el 2021 es el Programa Pequeño Deseo, a través del cual estamos haciendo posible que los niños de la Fundación Síndrome de Dravet hagan realidad sus sueños. En definitiva, la alegría e ilusión que provoca en nuestros niños el cumplimiento de un deseo le da fuerzas para continuar en su lucha y, para los padres, el hecho de ver feliz a su hijo, es el mejor impulso en la batalla. Además, otras iniciativas como nuestro Fondo de Solidaridad, el Programa de Atención Psicosocial a hermanos de personas con Síndrome de Dravet o el Programa de Secuenciación del Genoma Completo siguen en marcha, formando parte de esta batería de proyectos e iniciativas que mejoran de manera considerable la calidad de vida de las personas y familias con síndrome de Dravet.

Y otro año más hemos vuelto a hacer muchos kilómetros solidarios con RetoDravet, el equipo de deportistas solidarios más grande del mundo. Batiendo récords, el pasado mes de junio logramos que más de 1.200 personas se hicieran con su dorsal solidario y salieran con él a pasear, correr o practicar su deporte favorito, como parte de la campaña de difusión del síndrome de Dravet. También logramos que más de 130 edificios y monumentos emblemáticos por toda España se iluminaran de morado el 23 de junio, generando decenas y decenas de noticias en los medios de comunicación.

En definitiva, un año muy fructífero en el que os volvemos a dejar una vez más el informe para familias de fármacos en camino de la Fundación Síndrome de Dravet, en el que podréis comprobar todos los avances en investigación aquí mismo.

La mascarilla tapará nuestra sonrisa por la satisfacción del trabajo bien hecho, pero no el corazón con el que lo hacemos.

Para estas Navidades te deseamos felicidad, para Año Nuevo prosperidad, y para siempre salud, mucha salud.

¡Felices Fiestas!

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¿Te has descargado ya tu Dorsal Solidario 2022?

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.