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 de 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.

¡Únete a nuestra Fundación!

Si resides en España y tienes un hijo con síndrome de Dravet, no dudes en unirte a nuestra Fundación para disfrutar de todos sus beneficios y conectar con otras familias.

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Javier Álvarez

Javier Álvarez

Javier Álvarez es técnico superior en informática de gestión. En 1999 obtuvo la titulación de perito de seguros en las ramas de diversos y automoción, con acreditación tanto nacional como europea (FIEA y FUEDI), y en 2003 creó su propio gabinete de peritaciones. Desde la pandemia de COVID-19 se encuentra acogido a la prestación por cuidados de hijo con enfermedad grave (CUME).

Su primer hijo, Martín, nació hace ocho años y fue diagnosticado de síndrome de Dravet a finales de 2019, momento en el que Javier y su familia se incorporaron a la Fundación.

Desde entonces, junto a su mujer y a toda la familia, organiza cada año numerosas iniciativas solidarias para dar a conocer la enfermedad: mercadillos artesanales por distintos pueblos, tardeos solidarios, presencia en competiciones deportivas, la ruta 4×4 solidaria y difusión en medios de comunicación. Ahora, Javier adquiere responsabilidades adicionales en la Fundación Síndrome de Dravet, convirtiéndose en Delegado Regional, cargo con el que espera acompañar y apoyar a las familias Dravet en su día a día.

Se define como una persona activa, luchadora y positiva, siempre dispuesta a ayudar y con el firme objetivo de lograr un mundo sin Dravet y que nuestra meta, la cura, esté cada día más cerca.

Anxo Barcia

Anxo Barcia

Anxo estudió la licenciatura en Derecho en la Universidad Autónoma de Madrid. Trabaja en una consultora pero actualmente se encuentra acogido a la prestación por cuidados de hijo con enfermedad grave (CUME).

Anxo se incorporó a la Fundación en la Reunión Anual de Familias del año 2018. Su hijo Gael, de 8 años de edad, fue diagnosticado de síndrome de Dravet en 2016. Durante este tiempo ha colaborado con la Fundación en distintos eventos.

En marzo de 2024, Anxo adquiere responsabilidades adicionales en la Fundación Síndrome de Dravet, convirtiéndose en Delegado Regional de Madrid, cargo que aceptó con gran orgullo y con la esperanza de poder aportar todo lo posible para mejorar la vida de las personas afectadas por síndrome de Dravet. Es una persona muy tenaz, luchadora, amable y simpática. Siempre está dispuesta para escuchar y ayudar a los demás y con el firme objetivo de lograr un mundo sin Dravet y que nuestra meta, la cura, esté cada día más cerca.

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.

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.

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.

Javier Mateos

Javier Mateos

Javier Mateos trabaja en el sector de las telecomunicaciones y la energía desde 2012.

Su hijo Nicolás nació en agosto de 2016 y, a los nueve meses, fue diagnosticado de síndrome de Dravet tras realizarle unos análisis genéticos a raíz de varias crisis incontroladas y un status epiléptico de 50 minutos. Javier y su familia encontraron en la Fundación el apoyo y la comprensión que buscaban, y desde 2017 forman parte de ella.

Con el apoyo incondicional de su mujer, Sara, Javier acumula más de 40 eventos en los que difunde y visibiliza la enfermedad y recauda fondos a través de la venta de productos solidarios. Además, imparte charlas en colegios, escuelas de formación, centros cívicos y allá donde le llaman, para dar a conocer en profundidad la realidad de esta grave enfermedad. En 2026 coge las riendas como Delegado Regional para ayudar y apoyar a todas las familias Dravet que lo necesiten.

Lo hace convencido de que, trabajando juntos, un mundo sin síndrome de Dravet y la cura de la enfermedad estarán cada día más cerca.

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.