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El cannabidiol puede ser la respuesta para miles de pacientes con epilepsia que no responden a la farmacología tradicional

– Los ensayos clínicos podrían comenzar en Europa antes de fin de año.
– En Estados Unidos se está probando en una centena de niños con epilepsias farmacoresistentes.

Madrid, 22 de mayo 2014.- El próximo 22 de mayo se celebra en Madrid un encuentro con neurólogos y asociaciones de pacientes de epilepsia de toda Europa para tratar el uso de cannabidiol, purificado a partir del cannabis, como medicamento para esta enfermedad.

Durante el encuentro se darán a conocer algunos de los primeros resultados que se están obteniendo en Estados Unidos usando cannabidiol para tratar niños con graves epilepsias como parte de estudios preliminares. De ser positivos se podrían comenzar ensayos clínicos en Europa antes de final de año.

La reunión europea se celebra en medio de activos debates en Estados Unidos sobre el uso de cannabis medicinal para tratar epilepsia, que han llevado al Presidente Barak Obama a pronunciarse sobre una posible despenalización de su uso con fines medicinales.

“No se trata de promover el uso de cannabis para tratar enfermedades“, se asegura desde la Dirección Científica de la Fundación Síndrome de Dravet, responsable del encuentro, “sino de evaluar si el cannabidiol purificado podría convertirse en el fármaco que miles de afectados por epilepsias farmacoresistentes esperan”.

Se estima que un 1% de la población mundial sufre epilepsia. De estos, hasta un tercio de los pacientes son farmacoresistentes, es decir, no logran controlar sus crisis epilépticas de manera adecuada con los fármacos disponibles. Se trata en muchos casos de síndromes epilépticos como el síndrome de Dravet, en el que los afectados, mayoritariamente niños, sufren una epilepsia muy agresiva que puede provocar la muerte.

“Las mayoría de las enfermedades raras no tienen un tratamiento efectivo. Los pacientes con estas enfermedades son muy vulnerables ya que no son atractivos para la industria farmacéutica. El mundo de las enfermedades raras necesita una aproximación innovadora para acelerar la aparición de nuevos fármacos”, se afirma desde la presidencia de la Fundación Síndrome de Dravet.

Se habla de marihuana o cannabis medicinal para referirse a cepas muy enriquecidas en cannabidiol, que se cree responsable de su actividad medicinal, y con bajos niveles de tetrahidrocannabidiol (THC), el compuesto psicoactivo responsable de sus efectos recreativos. El principal problema para el uso médico del cannabis radica en la variación entre distintos cultivos y los problemas legales derivados de su actividad psicoactiva. Para evitar estos problemas, la empresa farmacéutica británica GW Pharma ha purificado cannabidiol, que bajo el nombre de Epidiolex, podría comenzar los ensayos clínicos en Europa este mismo año.

Epidiolex se está probando ya en una centena de niños con epilepsias farmacoresistentes en Estados Unidos para confirmar su seguridad antes de comenzar ensayos clínicos. Dichos resultados serán presentados durante el encuentro, que además supone un punto de encuentro entre los neurólogos y organizaciones de pacientes no solo de síndrome de Dravet sino de otras epilepsias y síndromes relacionados.

“La Fundación Síndrome de Dravet es una organización de promoción de la investigación. Nuestro objetivo es generar un ecosistema de investigación alrededor del Síndrome de Dravet que nos permita acelerar la aparición de nuevos fármacos. Hemos querido organizar esta conferencia para incrementar el conocimiento que la comunicad científica tiene sobre los canabinoides para uso medicinal ya que puede ser un tratamiento efectivo para determinados pacientes con Síndrome de Dravet”, asegura Julián Isla.

En España existe solo un precedente de medicamento aprobado derivado del cannabis. Se trata de Sativex, desarrollado también por GW Pharma, que contiene cannabidiol y THC a partes iguales y se usa para el tratamiento de dolor y espasticidad en pacientes con esclerosis múltiple. GW Pharma se especializa en aislar estos compuestos medicinales a partir de la planta de marihuana. Una vez aislados, tienen el potencial de convertirse en nuevas medicinas tras someterse a la evaluación de las agencias del medicamento de cada país.

“El cannabidiol es un compuesto producido de manera natural por la planta de la marihuana, pero este origen natural no implica que sea seguro. La naturaleza también ha inventado muchos venenos como la cicuta o toxinas como la tetánica. Como cualquier otro compuesto que se pretenda utilizar como medicamento, el cannabidiol debe pasar una evaluación rigurosa mediante ensayos clínicos para comprobar no solo su eficacia sino su seguridad y es precisamente para lo cual hemos convocado a la comunidad médica y de pacientes a este encuentro” explica la Fundación Síndrome de Dravet.

El encuentro en Madrid contará con la participación de GW Pharma así como un medio centenar de neurólogos, investigadores y representantes de asociaciones de pacientes de toda Europa.

 

Acerca de la Fundación Síndrome de Dravet

La Fundación Síndrome de Dravet nació en 2011 con la misión de promover y garantizar el desarrollo de la investigación en el entorno de la enfermedad, con el fin de avanzar en el conocimiento de sus causas, mejorar su diagnóstico y hallar tratamientos efectivos que permitan eliminar y mitigar los efectos del Síndrome de Dravet y otras enfermedades relacionadas.

Desde su constitución ha dedicado más de 600.000 euros a apoyar la investigación de esta patología y enfermedades afines. Este año destinará más de 440.000 euros al mismo fin. Además, cada año la organización dedica más de 100.000 euros a proyectos tecnológicos que mejoren la calidad de vida de los pacientes con Síndrome de Dravet y los mantengan en las mejores condiciones cognitivas y motoras posibles.

 

Para más información:

Departamento de Comunicación

comunicacion@dravetfoundation.eu Telf. 691 416 115

dravetfoundation.eu / Facebook: Fundación Síndrome de Dravet  /  @FundacionDravet

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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.