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Delegados Regionales

Conéctese con otras familias​

Delegados Regionales

“Somos una organización que pretende encontrar un tratamiento efectivo para el síndrome de Dravet”

Nuestros delegados regionales ayudan a brindar apoyo e información así como recursos y eventos locales para familias.

Mapa delegados Fundación Síndrome de Dravet

Nuestros Delegados Regionales

Además del Patronato de la Fundación Síndrome de Dravet y de las funciones adquiridas por sus diferentes miembros, en la Fundación Síndrome de Dravet tenemos el orgullo de poder contar además con nuestra red nacional de Delegados Regionales, que proveen apoyo a las familias en su día a día.

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Conéctese con otras familias en nuestro grupo privado de apoyo de Facebook una vez sea miembro de la Fundación Síndrome de Dravet

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Gloria Doménech

Gloria Doménech

Gloria, es Licenciada en Derecho por la Universitat de València, y tiene un postgrado en derecho mercantil. Aunque empezó ejerciendo como abogado, su trayectoria siempre ha estado muy vinculada el mundo de la empresa.
En la actualidad y desde hace ya casi 10 años, se dedica al mundo del seguro, como agente exclusivo en Generali. Además está certificada como asesor financiero y gestor patrimonial; y se dedica a gestionar las necesidades de sus clientes, como directora en una oficina de agencia.

En 2019 fue mamá de mellizos, un niño y una niña, y con 11 meses de edad su hijo fue diágnosticado con síndrome de Dravet. Por ello, entró a formar parte en la Fundación el verano de 2020, y no ha parado de luchar por dar visibilidad a esta enfermedad desde entonces, incorporándose como coordinadora de Delegados Regionales en abril de 2022.

Gloria, se define como una persona entusiasta y luchadora, que no se conforma. Con un carácter fuerte y muy social, sabe que es necesaria mucha ayuda para hacer frente a esta enfermedad rara y catastrófica como es el síndrome de Dravet, y vive convencida de que muy pronto la cura de su guerrero, será una realidad. Y con ello se compensará todo el esfuerzo por el que tantos padres Dravet llevan mucho tiempo luchando. Porque juntos somos fuertes.

Sory Bertol

Sory Bertol

Soraya, es técnico en cuidados auxiliares de enfermería, aunque actualmente trabaja en un supermercado.

Soraya empezó en la Fundación a finales del año 2011, cuando le diagnosticaron la enfermedad a su hija. Durante esos años, hizo un número de eventos por la zona para dar visibilidad y que la gente conociera la enfermedad que sufre tanto su hija como sus compañeros de batalla.

En marzo de 2022 Soraya adquiere responsabilidades adicionales en la Fundación Síndrome de Dravet, convirtiéndose en Delegada Regional, cargo que aceptó como persona activa que es.

Soraya es una persona muy luchadora, amable, simpática y que le gusta ayudar a los demás. Siempre está dispuesta para ayudar y, si es para difundir la enfermedad que nos ha tocado vivir, con más ganas que lo hace. Soraya quiere ver un mundo sin Dravet y que nuestra meta, la cura, esté cada día más cerca.

Sonia Bonilla

Sonia Bonilla

Sonia Bonilla es Ingeniera Industrial por la Universidad de Zaragoza y tambien titulada Bachelor in Science – University of Central Lanacashire – UK .Es directora de fábrica en una empresa multinacional del sector eléctrico.

Sonia pertenece a la Fundación Sindrome de Dravet desde el año 2012, cuando es diagnosticado con esta enfermedad su hijo. Empezó a colaborar con la Fundación en 2015 y desde 2018 es Delegada Regional.

Sonia es una mujer luchadora, comprometida ,con ganas de ayudar a las familias en nuestro duro día y día y colaborar para llegar cuanto antes a cumplir nuestro sueño, la cura del síndrome de Dravet.

Pilar Díaz

Pilar Díaz

Pilar Díaz es licenciada en Derecho y diplomada en Trabajo Social. Su experiencia profesional se ha desarrollado en el ámbito de los servicios sociales, trabajando tanto en entidades privadas como, ahora en la actualidad, en la administración pública.

Desde octubre de 2011, momento en que su hijo mayor fue diagnosticado con 6 años y medio de síndrome de Dravet, tanto ella como su familia se han involucrado en las actividades de la Fundación.

Cree firmemente en la premisa de que “lo que no se conoce no se puede curar” y en la importancia de dar a conocer esta enfermedad al resto de la sociedad.

Valora el trabajo en equipo, la asunción de responsabilidades, la importancia de las organizaciones de pacientes y del apoyo entre las familias para lograr la mejora de la calidad de vida de las personas con esta enfermedad y sus familias.

Carmen González

Carmen González

Carmen González tiene experiencia profesional en el sector del automóvil, ya que dedicó 18 años de su vida en ello en diferentes puestos hasta que en 2007 tuvo que dejar su vida laboral para cuidar de su hija diagnosticada con síndrome de Dravet, teniendo que hacerse cargo de ella las 24 horas del día. Se unió a la Fundación Síndrome de Dravet en 2011, después de un largo camino hasta que supo el diagnóstico. Aun así, no ha dejado de formarse en el ámbito de ayuda a personas dependientes, ya que una de sus virtudes es ayudar a los demás.

Carmen se define como una persona luchadora, solidaria, ambiciosa, con don de gentes y con muchas ganas de hacer llegar a la gente mediante eventos y diferentes iniciativas la lucha constante y la visibilidad del síndrome de Dravet.

Carmen está comprometida a dar todo lo que esté en su mano para ayudar a otras familias a combatir la enfermedad de la mejor manera amena posible, desde todo su amor y experiencia para así intentar mitigar el sufrimiento y los momentos de no saber qué hacer y sentirse solos.

¿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.