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¿Quiénes somos?

Nuestra organización nació con el objetivo de promocionar, incentivar y conectar los principales centros de investigación mundiales del síndrome de Dravet y otras enfermedades relacionadas.

Nuestra Misión

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

Usamos la innovación para acelerar la búsqueda de un fármaco efectivo, eliminando las barreras entre los investigadores y la industria. Queremos encontrar en el plazo de tres años un fármaco que elimine los síntomas y permita preservar el estado cognitivo de nuestros pacientes hasta que consigamos encontrar una solución definitiva para la enfermedad.

Dravet
Logo Fundación Síndrome de Dravet

“Transparencia, honestidad, integridad e innovación son los valores que sustentan nuestra Fundación”

Nuestra historia

La Fundación Síndrome de Dravet nació el 31 de mayo de 2011. El germen inicial fue un grupo de padres luchadores que no se resignaron a seguir el dictado de la enfermedad que ataca a sus hijos, el síndrome de Dravet, una epilepsia catastrófica de la infancia que comienza durante el primer año de vida, dejando graves secuelas neurológicas. Este grupo de padres no se resignó y decidió luchar contra la enfermedad a través de la investigación y para ello crearon la Fundación.

Nuestra organización nació con el objetivo de promocionar, incentivar y conectar los principales centros de investigación mundiales del síndrome de Dravet y otras enfermedades relacionadas. Se sustenta en el principio de un modelo colaborativo uniendo a profesionales, pacientes, investigadores, médicos, voluntarios y patrocinadores en la búsqueda de una terapia efectiva. El objetivo principal es eliminar las barreras que impiden que la investigación sobre el síndrome de Dravet avance, así como encontrar fármacos y tratamientos efectivos que permitan eliminar, mitigar e incluso curar la enfermedad.

Nuestros valores

Nos comprometemos a realizar nuestra actividad de manera TRANSPARENTE, promoviendo la HONESTIDAD e INTEGRIDAD en todas nuestras actuaciones. Miramos al futuro a través de la INNOVACIÓN, mediante el desarrollo de nuevas vías de investigación.

Nuestra visión

“Un mundo sin síndrome de Dravet”

Queremos un mundo donde sufrir una enfermedad poco frecuente no signifique una condena. Queremos un mundo en el que la información científica pueda fluir sin barreras, un mundo en el que pacientes, médicos, investigadores y empresas trabajen juntos para poder ayudar también a las enfermedades poco frecuentes. Queremos un mundo en el que los pacientes que sufren una enfermedad “rara” no estén solos. Queremos que nuestro trabajo pueda ayudar también a otras enfermedades. No queremos que nuestro sufrimiento sea en vano.

Patronato

Amparo Bastos

Secretaria y Patrona

Ana María Morales

Ana María Morales

Patrona

Lauraine McKenna

Lauraine Mckenna

Patrona

Juana Mari Olivares

Juana Mari Olivares

Patrona

Nuestro equipo y colaboradores

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 con una serie de personas totalmente comprometidas con nuestra causa.

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María Cabello

Apoyo Psicosocial

Isabel Cuenca

Isabel Cuenca

Investigación Genética

Rubén Domínguez

Rubén Domínguez

Innovación y Tecnología

Carmen Escalona

Carmen Escalona

Ilustración científica

Marta González

Marta González

Comunicación científica

Noelia González Gracia

Noelia González

Investigación Social

Esther Hernández

Esther Hernández

Gestión de proyectos

Rodrigo Hernando

Rodrigo Hernando

Coordinación científica

Rodrigo Martínez

Rodrigo Martínez

Investigación genética

Robert Pleticha

Rob Pleticha

Marketing

Miren Uriarte

Miren Uriarte

Comunicación

Gloria Valencia

Gloria Valencia

Comunicación

Delegados Regionales

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

Delegados Regionales.

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José Ángel Aibar

José Ángel Aibar

José Ángel Aibar tiene experiencia internacional en ingeniería y ocupa un puesto de liderazgo en una empresa tecnológica líder, con sede en su principal centro mundial de Investigación y Desarrollo en Sophia Antipolis, un parque tecnológico en la Riviera Francesa conocido por ser el primer centro científico y tecnológico de Europa.

José se involucró en las actividades de la Fundación Síndrome de Dravet, donde ejerce como presidente y director ejecutivo desde junio de 2018, poco después de que uno de sus hijos fuera diagnosticado con síndrome de Dravet, una forma de epilepsia rara, catastrófica y de por vida que comienza en el primer año de vida con convulsiones frecuentes y prolongadas.

Además de su papel en la Fundación Síndrome de Dravet, también es miembro de varios grupos de trabajo de enfermedades raras y epilepsia, como Epag EpiCARE y el Grupo Asesor Digital y de Datos de Eurordis, así como miembro del comité asesor de varios proyectos internacionales y de la industria.

Debido a la enfermedad de su hijo, José cree en la importancia de las organizaciones de los pacientes para mejorar el diagnóstico, el tratamiento, la atención y el apoyo para obtener mejores resultados para todos los pacientes con epilepsias raras y complejas, incluyendo el síndrome de Dravet.

Elena Cardenal

Dr. Elena Cardenal, PhD

Elena Cardenal es la Directora Científica de la Fundación Síndrome de Dravet.

Elena Cardenal es licenciada en Biología por la Universidad de Sevilla. Cursó un Máster Universitario en Genética Molecular y Biotecnología Microbiana y posteriormente realizó una tesis doctoral dentro del Programa Oficial de Doctorado en Biología Molecular y Biomedicina de la Universidad de Sevilla. Durante todos estos años Elena adquirió múltiples conocimientos en genética e inmunología, así como en la escritura científica.

Elena se mudó a Suiza en 2014 para trabajar como investigadora en el Departamento de Bioquímica de la Universidad de Ginebra.

A la vez que realizaba sus labores en investigación y educación, Elena adquirió nuevas aptitudes en el ámbito de gestión de proyectos científicos. Además, Elena inició su andadura en el mundo de la comunicación científica a través de la escritura de artículos de divulgación y varios voluntariados como manager de redes sociales para diversas sociedades científicas internacionales de alto prestigio.

En 2018, Elena, aun ligada a la investigación en la Universidad de Ginebra, comenzó a trabajar como coordinadora para una reconocida organización científica suiza, Life Sciences Switzerland (LS2). Las múltiples labores de Elena en dicha organización incluyeron la gestión de datos, la solicitud de fondos, la organización de eventos científicos y la comunicación científica. Elena estableció estrecho contacto con múltiples investigadores de muy diversas ramas de la ciencia básica y clínica (Genética, Biología Celular, Biofísica, Bioinformática, Neurociencia, Medicina, Química, etc.), además de con universidades, empresas y asociaciones. 

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.