Vivir con Dravet

El tratamiento del síndrome de Dravet requiere un tratamiento integral. Además de los medicamentos, otros tratamientos no farmacológicos pueden ser útiles junto con medidas de atención integral. Se pueden usar varios tratamientos para pacientes con síndrome de Dravet, tanto farmacológicos como no farmacológicos.

Tratamientos para Dravet

En la actualidad no existe cura para el síndrome de Dravet; sin embargo, es posible reducir el número y la gravedad de las crisis epilépticas con tratamientos farmacológicos (medicamentos antiepilépticos) y evitando los factores desencadenantes. El tratamiento del síndrome de Dravet requiere un tratamiento integral. Además de los medicamentos, otros tratamientos no farmacológicos pueden ser útiles junto con medidas de atención integral. La familia juega un papel crítico.

Todos los tratamientos deben realizarse bajo la supervisión de un médico con conocimientos sobre el síndrome de Dravet. Hay muchos tratamientos antiepilépticos en todo el mundo, pero es posible que algunos no lo estén o no estén aprobados oficialmente en nuestro país. Toda iniciación, cambio o modificación del tratamiento antiepiléptico debe realizarse solo con la aprobación del médico que sigue regularmente al paciente. Si tiene alguna pregunta sobre los tratamientos, no dude en consultar a este médico. Se pueden usar varios tratamientos para pacientes con síndrome de Dravet: Farmacológicos y no Farmacológicos.

Fármacos

TRATAMIENTOS FARMACOLÓGICOS

Los medicamentos antiepilépticos son un grupo diverso de productos farmacéuticos, utilizados en el tratamiento de las crisis epilépticas.

En todo el mundo hay una gran cantidad de medicamentos antiepilépticos disponibles. Se dividen en varias clases. Su uso depende del trastorno epiléptico específico. Algunos pueden mejorar la situación del paciente, mientras que otros pueden empeorarlo. La disponibilidad de medicamentos específicos en España dependerá de las regulaciones gubernamentales y las decisiones de comercialización del fabricante farmacéutico. El síndrome de Dravet es una epilepsia altamente farmacorresistente, lo que significa que las crisis epilépticas son difíciles de controlar, y que muchos pacientes se tratan con más de un medicamento antiepiléptico.

1/ Medicamentos frecuentes

Por experiencia, se conoce que el valproato y las benzodiacepinas son eficaces en la reducción de las crisis de estos pacientes. Se recomienda iniciar el tratamiento con valproato tras la primera crisis. Si no se consigue control de las crisis, se recomienda agregar topiramato o bien estiripentol. Tanto estiripentol como topiramato se suelen administrar añadiendo de base valproato y clobazam.

2/ Medicamentos a evitar

La lista a continuación indica algunos de los medicamentos que pueden empeorar las crisis epilépticas y, por lo tanto, deben evitarse:

  • Lamotriginia (Lamictal, Labileno, Crisomet)
  • Fenitoína (Dilantin,
  • Epanuntin, Sinergina)
  • Lacosamida (Vimpat)
  • Fosfenitoína (Cerevyx, Prodilantin)
  • Carbamazepina (Tegretol, Calepsin, Cargagen, Barbatrol, Epitol, Finlepsin, Sirtal, Stazepine)
  • Oxcarbazepina (Trileptal)
  • Rufinamida (Inovelon)
  • Tiagabina (Gabitril)
  • Acetato de eslicarbazepina (Zebinix)
  • Vigabatrina (Sabril, Sabrilan, Sabrilex)

3/ Tratamiento de emergencia

El síndrome de Dravet tiene un impacto importante en la vida familiar, especialmente cuando el niño tiene crisis epilépticas prolongadas que requieren tratamiento hospitalario.

Cuando hay crisis epilépticas graves de larga duración, es útil y necesario tener un plan bien elaborado para el niño con síndrome de Dravet, los padres y los hermanos.

Junto con expertos, desde la Fundación Síndrome de Dravet hemos desarrollado un protocolo médico de urgencia específico para el síndrome de Dravet, el cual recomendamos llevar siempre con el paciente para hacer uso de él en el caso de que tenga una crisis prolongada.

 

Protocolo de Emergencia

Este ejemplo de protocolo médico de urgencia para el síndrome de Dravet se puede descargar en el siguiente botón, para enviárselo al neurólogo, adaptarlo al paciente y llevarlo siempre junto con el paciente con síndrome de Dravet para entregárselo al personal de urgencias en el caso de que haya una crisis prolongada.

OTRAS MEDIDAS ANTIEPILÉPTICAS

A veces, los medicamentos antiepilépticos no son suficientes para controlar las crisis epilépticas. Después de hablar con su médico, se pueden considerar otros tratamientos además de los medicamentos. Tenga en cuenta que cada niño con síndrome de Dravet es único y que lo que podría funcionar para un niño puede no funcionar para otro. Estos tratamientos no farmacológicos han mostrado resultados variables.

Ketogenic-diet-AdobeStock-190780160-OG-TWjpg
Estimulador del nervio vago

1/ Dieta cetogénica

La dieta cetogénica es una dieta rica en grasas, adecuada en proteínas y baja en azúcar. La dieta obliga al cuerpo a quemar grasas en lugar de azúcares. Normalmente, los azúcares contenidos en los alimentos se convierten en glucosa, que luego se transporta alrededor del cuerpo y es particularmente importante para alimentar la función cerebral. Sin embargo, si hay muy poca azúcar en la dieta, el hígado convierte la grasa en ácidos grasos y cuerpos cetónicos. Los cuerpos cetónicos pasan al cerebro y reemplazan la glucosa como fuente de energía. Un nivel elevado de cuerpos cetónicos en la sangre, un estado conocido como “cetosis”, puede llevar a una reducción en la frecuencia de las crisis epilépticas. Existen varias variantes de esta dieta, que incluyen recetas caseras o fórmulas preparadas para consumir. Es una dieta muy estricta con riesgos potencialmente significativos y que no debe hacer por su cuenta. Requiere el asesoramiento de un equipo con experiencia para maximizar los beneficios y minimizar los riesgos.

2/ Estimulación del nervio vago

El nervio vago es un nervio especial que transporta los impulsos motores del cerebro a varios órganos (pulmones, corazón, intestinos, vasos sanguíneos…) y viceversa. La estimulación vagal puede regular los ataques epilépticos por un mecanismo de acción desconocido. La estimulación del nervio vago consiste en la implantación quirúrgica de un dispositivo debajo de la piel del tórax, similar a un marcapasos. Este dispositivo luego se conecta mediante un cable oculto debajo de la piel al nervio vago en el cuello.

Cuidado integral del paciente

FIEBRE Y VACUNACIÓN

Existe la sensación general de que los pacientes con síndrome de Dravet son más sensibles a las infecciones en comparación con otros. Sin embargo, no tienen ninguna deficiencia inmunológica conocida.

Se sabe que cada vez que una persona con síndrome de Dravet tiene fiebre, es más probable que experimente crisis epilépticas. Si bien es cierto que algunas vacunas pueden causar una fiebre corta que puede desencadenar una crisis epilépticas, todavía se recomienda encarecidamente que los niños con síndrome de Dravet reciban todas las inmunizaciones infantiles de rutina.

Una dosis correcta de medicamentos antipiréticos (por ejemplo, paracetamol o ibuprofeno) por lo general es efectiva para reducir la fiebre. Recuerde pedirle a su médico de cabecera una receta de medicamentos antipiréticos.

Incluso si estos pacientes son sensibles a la fiebre, es imposible eliminar todas las enfermedades infecciosas. Deben tener una vida social lo más normal posible y no deben estar “aislados”.

Los padres a menudo temen que la vacunación pueda desencadenar convulsiones, especialmente porque:

  •  Uno de los efectos secundarios de las vacunas es a veces causar fiebre
  • La fiebre en algunos niños con epilepsia puede desencadenar una convulsión
  • El primer episodio epiléptico para el síndrome de Dravet a menudo es desencadenado por una fiebre

Sin embargo, se recomienda encarecidamente vacunar a estos niños para protegerlos de enfermedades infecciosas graves.

Antes de la administración de la vacuna, hable sobre las pautas a seguir con su médico. En algunos casos conviene administrar con antelación un medicamento antipirético para la prevención de la fiebre o incluso administrar una dosis de algunos de los medicamentos antiepilépticos.

FACTORES AMBIENTALES QUE PUEDEN PROVOCAR CRISIS EPILÉPTICA

Los patrones visuales (repetición de formas visuales) pueden desencadenar crisis epilépticas en algunos pacientes. Aunque no siempre es fácil evitarlos, existen algunas soluciones, como enmascarar completamente un ojo.

Algunos pacientes con síndrome de Dravet pueden tener convulsiones provocadas por luces brillantes como luces estroboscópicas o el sol reflejado desde el agua en la playa. Para otros, los colores y las formas parpadeantes pueden ser importantes, como los videojuegos o los dibujos animados.

Consejos para estos pacientes:

  • Evite las luces brillantes que parpadean
  • Limite el tiempo que pasa frente a la televisión y otras pantallas electrónicas y reduzca su contraste. Siéntese lo más lejos posible de la pantalla y mantenga las luces encendidas en la habitación. Evita mirar pantallas en la oscuridad
  • Gafas de sol regulares pueden ser útiles para el exterior. El valor de las gafas filtrantes especiales es incierto, pero puede ser útil para actividades al aire libre.

El aumento de la temperatura corporal es un factor desencadenante de las convulsiones. Conviene evitar los cambios bruscos de temperatura corporal.

Puede ser conveniente evitar los deportes intensivos, el ambiente caluroso (estancias calurosas, automóvil…), los baños calientes o en la piscina. Algunos pacientes utilizan chalecos de enfriamiento o neoprenos para evitar los cambios bruscos en la temperatura corporal.

TRASTORNOS ASOCIADOS

Todos los niños afectados por el síndrome de Dravet son únicos y puede experimentar uno o más de los siguientes trastornos asociados:

– Deterioro cognitivo
– Problemas de comportamiento y psicológicos
– Trastornos del sueño
– Problemas crecimiento y nutrición
– Perturbaciones de coordinación y ortopédicos
– Dificultades en la marcha
– Signos de disautonomía
– Problemas de salud dental
– Infecciones frecuentes en las vías respiratorias
– Problemas cardiovasculares

Aunque la evolución del síndrome de Dravet es muy particular según cada paciente, las funciones cognitivas casi siempre se ven afectadas.

La dimensión, la gravedad y la naturaleza del deterioro cognitivo se pueden documentar mediante pruebas estandarizadas adaptadas a la edad. Esta prueba puede realizarse a intervalos a lo largo de la vida del paciente.

La presencia de alteraciones cognitivas importantes precisa la implicación de los profesionales de la psicopedagogía y/o neuropsicología para implantar terapias de estimulación y enriquecimiento ambiental.

Se pueden observar problemas de comportamiento y psicológicos en pacientes con síndrome de Dravet que pueden afectar su vida familiar y social.

Estos factores varían de un niño a otro y pueden presentar rasgos autistas, alteraciones graves de la conducta, comportamientos repetitivos, hiperactividad con o sin trastorno de la atención y problemas con la interacción social.

Se aconseja una vigilancia cercana al niño, especialmente cuando se asocia con hiperactividad, ya que pueden no percibir una situación como peligrosa.

Las actividades estereotípicas son aquellos movimientos y comportamientos repetitivos que pueden interferir con el juego estructurado.

La conducta desafiante puede hacer que los pacientes con Dravet sean difíciles de manejar en casa y en público. Algunas conductas desafiantes pueden estar vinculadas a una mala comunicación basada en el deterioro del lenguaje. Muchos pacientes con síndrome de Dravet tienen dificultades para interactuar adecuadamente con niños de su misma edad.

Hay pacientes que puede precisar de la toma de medicamentos específicos para tratar las alteraciones conductuales.

Los pacientes Dravet pueden experimentar dificultades para dormir. Los problemas pueden incluir somnolencia excesiva o dificultad para conciliar el sueño, insomnio, apneas, terrores nocturnos o despertar prematuro. Existen muchas causas que incluyen convulsiones no reconocidas o efectos secundarios de algunos de los medicamentos antiepilépticos que pueden mejorarse mediante el ajuste de la dosis.

Estos pueden incluir retraso del crecimiento, osteopenia (densidad ósea deficiente), escoliosis (curvatura de la espina dorsal), problemas con la alimentación, el apetito y la absorción de nutrientes, o dificultades con el proceso de la pubertad.

La mayoría de los trastornos de la alimentación, como la anorexia o la pérdida de apetito, son consecuencia de los tratamientos con medicamentos antiepilépticos. Los ajustes en la dosis pueden no ser fáciles debido al riesgo de más convulsiones. A veces un psicólogo puede ser de ayuda.

Los pacientes con síndrome de Dravet a menudo están sujetos a alteraciones motoras y cambios posturales. Los síntomas pueden incluir trastornos en la marcha, escoliosis, deformidades del pie o de la rodilla.

Estos problemas pueden ser particularmente importantes durante la adolescencia. La marcha tiende a deteriorarse a partir de los nueve o diez años de edad, cuando los pacientes desarrollan gradualmente un patrón especial en cuclillas cuando caminan. Pueden tener dificultades para caminar largas distancias, aunque por lo general mantienen la capacidad de caminar por casa y en distancias cortas. Para los desplazamientos largos, puede ser necesario el uso de sillas o carros especiales.

Algunos pacientes Dravet han necesitado llevar unos DAFOS para iniciar la marcha a los 18 meses de edad. Consulte con su especialista.

Las habilidades motoras finas también se ven afectadas y pueden tener consecuencias en la lectura, la escritura y el dibujo.

Alteraciones en la regulación de la temperatura, sudoración, ritmo cardíaco, la circulación sanguínea y digestión.

Algunos pacientes suelen presentar problemas de salud dental, como el retraso en la erupción dental, bruxismo, maloclusiones, falta de piezas dentales, malformaciones, etc.

Puede existir la posibilidad de infecciones frecuentes en las vías respiratorias, (oídos, nariz, senos paranasales, garganta, bronquios y pulmones.), del aparato digestivo o de las vías urinarias (estómago, intestinos, vejiga y riñones).

Incluye frecuencia cardíaca rápida o lenta, ritmo cardíaco irregular y anormalidades en la estructura del corazón.

 
 

¡Haz tu donación!

Tu aportación se destinará a ayudar a nuestros guerreros y sus familias en su lucha contra el síndrome de Dravet, para conseguir que no pierdan nunca la sonrisa.

Esperanza

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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.