Entrevistamos a Susana Boronat Guerrero

Hoy os presentamos a Susana Boronat Guerrero, directora de Pediatría del hospital de la Santa Creu i Sant Pau de Barcelona y miembro de nuestro Comité Científico. Susana se dedica a la investigación clínica. Sin embargo, como sabe la importancia de la investigación básica (investigación que se hace en los laboratorios para ampliar el conocimiento y luego trasladarlo a la investigación clínica), colabora estrechamente con el laboratorio de genética, porque «ambas investigaciones deben ir muy unidas».

Aquí leerás cómo una mujer buena en multi-tasking es capaz de dirigir un departamento de pediatría, ver a pacientes para segundas opiniones e investigar mientras colabora con asociaciones de pacientes. Todo para tener una visión lo más completa posible y ayudar a las personas.

INTRODUCCIÓN

¿Por qué quisiste ser médico?
Me apasiona la medicina desde que tengo uso de razón. Me gusta mezclar el cuidado de los pacientes y sus familias con intentar descubrir cosas nuevas para avanzar contra la lucha de las enfermedades.

¿Te apoyaron tus padres en tu decisión?
Totalmente. Siempre estuvieron muy orgullosos de mí.

CAMINO ACADÉMICO

¿Has hecho un posgrado? ¿Cuál?
Hice una estancia de formación en investigación clínica en Epilepsia infantil en la Universidad de Harvard durante 2 años.

¿Cuál es tu especialidad?
Pediatría. Me he subespecializado en Neuropediatría en España y en Genética clínica en Estados Unidos.

¿En qué consistió tu tesis doctoral?
Se tituló «Estudio de la malformación de Chiari 1: correlación clínico-radiológica en la infancia e investigación de la base genética».

Esta enfermedad consiste en una malformación de la fosa ósea posterior del cráneo que alberga el cerebelo y que en algunas personas es más pequeña de lo habitual, lo que puede provocar síntomas graves e incluso la muerte porque el cerebelo comprime zonas del tronco cerebral.

¿Estaba relacionado el tema de tu tesis con la investigación que realizas ahora?
No. Me interesan distintos temas relacionados con el cerebro, pero siempre tienen en común una base genética.

¿Te costó llegar a ser médico?
No, siempre me ha sido fácil estudiar y sacar buenas notas.

¿Qué valores crees que se necesitan para ser médico/investigador/a?
Para ser un buen médico lo más importante es preocuparte por el bienestar de tus pacientes. Eso es lo que te impulsa en el día a día a hacerlo lo mejor posible dentro de tus limitaciones y seguir adelante. Para ser un buen investigador se necesita tener una meta clara y ser meticuloso y tenaz.

CAMINO PROFESIONAL

¿Fue fácil encontrar un puesto trabajo?
Sí, he sido afortunada y he podido ir trabajando y avanzando en distintas áreas que me han interesado, desde la Neuropediatría a la Genética clínica y desde la asistencia a la investigación.

En el momento actual, trabajo en gestión sanitaria, como directora de un servicio de Pediatría y también profesora de Medicina en la Universidad.

¿Qué es lo que más te gusta de ser médico?
Lo que más me gusta es la asistencia clínica.

¿Y lo que menos?
Ahora estoy en gestión sanitaria y es lo que menos me gusta, aunque quiero hacerlo para poder conseguir mejoras más importantes y extensas en la asistencia a los pacientes, más allá de lo que les puedo apoyar como médico en cada caso individual.

¿Cuánto tiempo llevas siendo médico?
Soy pediatra desde hace 20 años. Los últimos 15 especializada en Neuropediatría.

¿Cuál es tu objetivo profesional?
Mejorar las cosas en la asistencia médica de los niños afectados por enfermedades neurológicas raras y graves.

También potenciar que los médicos asistenciales hospitalarios puedan dedicar más tiempo a la investigación clínica, ya que la organización sanitaria actual hace extremadamente difícil poder combinar asistencia e investigación clínica.

¿Por qué investigas el síndrome de Dravet?
Porque mi área principal de interés son las epilepsias raras genéticas. El síndrome de Dravet se encuentra en una posición avanzada en términos de investigación que hacen prever que pueda aplicarse terapia génica para su cura en breve. Ello servirá de avanzadilla para que otras epilepsias genéticas raras y graves puedan avanzar más rápidamente gracias a lo que se consiga en el síndrome de Dravet. La terapia génica es mi área de especial interés.

¿Conoces a alguien que sufra síndrome de Dravet?
Sí, a varios pacientes, aunque nadie de mi familia.

EL DÍA A DÍA EN INVESTIGACIÓN CLÍNICA

En tu opinión, ¿cuál es la más complicada?
En mi opinión, lo más complicado es la interpretación de las mutaciones nuevas de significado incierto en genes ya conocidos y las mutaciones en genes nuevos, hasta ahora desconocidos.

Las técnicas diagnósticas han avanzado tan rápido que no estamos preparados para entender qué provocan las alteraciones que detectamos.

¿Cuál es la técnica más novedosa?
El avance de las técnicas moleculares de diagnóstico, como la secuenciación del exoma o del genoma han permitido un avance exponencial en el campo.

¿Y la más «antigua»?
El cariotipo. Todavía tiene alguna aplicación, pero muy concreta.

¿Cuánto tardas en procesar una muestra?
Actualmente tenemos el resultado de una secuenciación de exoma de 20.000 genes en tres meses. Si es urgente, como en el caso de un diagnóstico prenatal, puede llegar a tenerse en 1 mes aproximadamente.

¿De qué tejidos son las muestras?
Normalmente de una muestra de sangre, ya que permite extraer más ADN. Aunque en algunos casos especiales podemos necesitar extraer ADN de otros tejidos, como un frotis de mucosa bucal, biopsia de piel o incluso orina.

¿Qué proyectos tienes para este año?
Este año estamos creando las bases de funcionamiento de la Unidad Conjunta de Epilepsia de Sant Pau con el Hospital del Mar, que es CSUR ERN de epilepsias refractarias.

Además, estamos poniendo en marcha varios proyectos que esperamos que podamos anunciar en breve.

¿Se te hace difícil explicarle al paciente o a su familia la enfermedad que padece?
Sí, aunque llevo ya muchos años dedicada a esto y te acostumbras.

Lo más importante es ser sincero e intentar explicarlo lo mejor posible, adaptándote al nivel sociocultural de la familia. Es importante que puedan contactar contigo por e-mail o teléfono en los días siguientes e incluso repetir la visita de información del diagnóstico, porque muchas familias se quedan bloqueadas ante la información y necesitan un tiempo para procesar y poder expresar sus dudas.

¿Ha cambiado mucho el diagnóstico para el síndrome de Dravet desde que empezaste?
Totalmente. Cuando yo empecé sólo podías hacer un diagnóstico clínico. La posibilidad de diagnóstico molecular llegó cuando ya llevaba unos años.

De todas formas, el diagnóstico sigue siendo clínico, ya que en algunos pacientes no puede detectarse la mutación, aunque estamos mejorando en las técnicas para detectar estas mutaciones «escondidas».

¿Cuál ha sido la experiencia médica más compleja que has vivido?
Lo más difícil son las enfermedades genéticas neurodegenerativas, aquellas que acaban con la vida del paciente en pocos años, mientras va perdiendo facultades neurológicas. El acompañamiento en cuanto a cuidado paliativo es duro pero las familias se sienten muy acompañadas y te lo agradecen mucho, sobre todo que los acompañes en el proceso final de muerte.

¿A veces te sientes afectada por los casos de tus pacientes?
Siempre me afecta, aunque tienes que aprender a vivir con ello. Si te afecta demasiado, no les puedes ayudar al máximo cunado debes tomar decisiones objetivas y además no puedes funcionar bien a nivel personal ni familiar.

¿Has realizado o participado en alguna investigación en síndrome de Dravet?
Sí, trabajo en varios proyectos sobre descripción de historia natural y calidad de vida de los pacientes y sus familias.

¿Cuáles son los mejores hábitos personales cuando se cuida de un paciente con síndrome de Dravet?
Los padres y otros familiares sufren muchísimo y es importante que se obliguen a cuidarse al máximo para poder hacer frente al enorme reto que supone el día a día y no caer enfermos o con depresión/ansiedad. Han de comer y dormir de forma adecuada, hacer algo de deporte, intentar tener un respiro de vez en cuando para hacer alguna actividad de ocio…

SOCIEDAD E INVESTIGACIÓN

¿Cuál es la importancia de la investigación en la sociedad?
Depende de lo que investigue. Hay áreas que tienen un impacto inmediato y visible en el bienestar humano. Aunque todos suman en ampliar el conocimiento global y hacernos avanzar.

¿Crees que es importante la investigación de enfermedades raras?
Muy importante. Precisamente por ser raras, cuesta mucho más poder extraer información fiable que ayude a otros pacientes afectos de la enfermedad y existen muchos menos investigadores implicados.

¿Cómo crees que la investigación del síndrome de Dravet puede influir en la sociedad en general?
Creo que sobre todo aportará esperanza, porque mostrará avances importantes y nuevas terapias que a su vez arrojarán luz sobre muchas otras epilepsias raras.

¿Qué te llevo a convertirte en miembro del Comité Científico de la Fundación Síndrome de Dravet?
Creo que es primordial para el avance científico en enfermedades raras que los médicos y las asociaciones de pacientes colaboren muy estrechamente. Me permite ayudar de forma rápida, estrecha y efectiva. Hasta ahora la experiencia ha sido muy positiva.

¿Qué beneficios personales obtienes de esta membresía?
Trabajo extra, jaja… pero como soy un poco adicta al trabajo ya me va bien.

El beneficio también es sentimental porque tengo una hija con epilepsia y colaborar con la asociación es una forma indirecta de aportar mi granito de arena como madre.

PARA TERMINAR

¿Eres optimista en la lucha contra el síndrome de Dravet? ¿Por qué?
Sí, creo firmemente que las terapias avanzadas potencialmente curativas, como la terapia génica, ya están muy cerca y como sociedad debemos hacer lo imposible para que nos lleguen casi al mismo tiempo que a otros países, como Estados Unidos.

¿Alguna recomendación para alguien que está estudiando o empezando su carrera profesional?
Que escoja algo que realmente le apasione y entonces se imagine haciendo eso con 30 años más y con la misma pasión o mayor. Esa es la elección correcta.

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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.