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Jornadas Científicas y Familiares 2023

Scientific and Family Days 2023

Dravet Syndrome Conference 2023

When and where: 23rd of March 2023 in Madrid

Dravet Syndrome Foundation Spain organises a new edition of the Dravet Syndrome Conference, which will take place on Thursday 23rd of March 2023 in Madrid, Spain.

After the great success of the 2022 edition, we are proud to re-engage this meeting in person, open to all clinicians, researchers, and professionals from the pharmaceutical industry from all over the world, with the common interest of fighting epilepsy.

During the conference, presentations will include the latest advances and updates in the management and treatment of Dravet syndrome, including both new available drugs and treatments in development. This event will represent a unique opportunity to get up to date on Dravet syndrome management, as well as to discuss and exchange ideas in the most collaborative, relaxed and fruitful way possible with international experts.

Therefore, the organising committee encourage all stakeholders working in the health and R&D medicine sector to join this conference: policy makers, academics and researchers, pharmaceutical industry and other sectors in healthcare, SMEs and mid-sized enterprises, patient representatives, regulators, representatives of other public-private partnerships and research-funding organisations.

The Dravet Syndrome Conference 2023 will take place at the Official College of Nursing of Madrid, Spain, located in the former factory of the American sewing machine company Singer, an emblematic building of the 20th century.

Breaks and lunch will take place in the Nursing History Museum of the Official College of Nursing in Madrid, which is the only nursing museum in all of Spain, receiving visitors from all over the world.

Registration will be free of charge, but mandatory for organizational reasons.

With the scientific endorsement of:

European Reference Network EpiCARE

European Paediatric Neurology Society

European Academy of Neurology

Agenda

08.30 – 09.00

Welcome & Registration

09.00 – 09.15

Opening statements & Introduction to the program
Chair: José Ángel Aibar,  Fundación Síndrome de Dravet

09.15 – 09.45

Dravet syndrome perspectives
Chair: Lieven Lagae, KU Leuven

Dravet syndrome by a parent

Lauraine Mckenna, Patrick’s mom

Dravet syndrome by a young epileptologist
tbc

09.45 – 11.15

Coexisting comorbidities in Dravet syndrome
Chair: Lieven Lagae, KU Leuven

Sleep disorder in Dravet syndrome
tbc
Cognition in Dravet syndrome
Lieven Lagae, KU Leuven
Behaviour management in Dravet syndrome
tbc
Neuropsychiatric disorders in Dravet syndrome
Susana Boronat, Hospital Sant Pau Barcelona
SUDEP in Dravet syndrome. Can it be mitigated?
Franck Kalume, University of Washington

11.15 – 11.45

Networking Coffee Break & Industry Exhibition

11.45 – 13.00

Dravet syndrome in adults
Chair: Danielle Andrade, University of Toronto

The Dravet syndrome patient journey: The Spanish journey
tbc
Comorbidities in adults with Dravet syndrome
Vicente Villanueva, Hospital La Fe
Transition taking comorbidities into account
Danielle Andrade, University of Toronto
Undiagnosed adults with Dravet syndrome. What can be done?
Sarah Weckhuysen, University of Antwerp

13.00 – 14.30

Networking lunch & industry exhibition

14.30 – 15.30

What’s coming next in Dravet syndrome? 1/2
Chair: Rajvinder Karda, EGA Institute for Women’s Health at UCL

Update on the research pipeline for Dravet syndrome
Vittoria Spinosa, Fundación Síndrome de Dravet

Clinical update on soticlestat (TAK-935) for the treatment of Dravet syndrome
Vicente Villanueva, Hospital La Fe

Scientific talk II
tbc

Scientific talk III
tbc

15.30 – 16.00

Networking Coffee Break & Industry Exhibition

16.00 – 16.45

What’s coming next in Dravet syndrome? 2/2
Chair: Astrid Pañeda, Forge Biologics

Scientific talk I

tbc

Scientific talk II
tbc

Scientific talk III
tbc

16.45 – 17.00

The power of patient groups in drug development
Vittoria Spinosa, Fundación Síndrome de Dravet

17.00

Close & thank-yous
José Ángel Aibar, Fundación Síndrome de Dravet

Venue

The Dravet Syndrome Conference 2023 will take place at the Official College of Nursing of Madrid (Spain), located in the former factory of the American sewing machine company Singer, an emblematic building of the 20th century. The venue is located at Avenida de Menéndez Pelayo, 93, in the heart of the city and less than 10-minute walk away from Paseo del Prado and Atocha station.

Breaks and lunch will take place in the Nursing History Museum of the Official College of Nursing in Madrid, which is the only nursing museum in all of Spain, receiving visitors from all over the world.

With the scientific endorsement of:

European Reference Network EpiCARE

European Paediatric Neurology Society

European Academy of Neurology

Become a sponsor

As a patient organisation, we rely on the generosity of corporate sponsors to help us carry out our foundational activities.
Contact us at [email protected] and find out our various sponsoring options!

Registration

Attendance to this conference is free of charge, but mandatory for organisational reasons. You just need to fill in the fields below to register for the Dravet Syndrome Conference 2023, that shall take place on the 23rd of March 2023 in Madrid.  At no cost, the registration includes coffee and beverages, lunch, attendance to all sessions and the conference materials.

For more information on this event, visit the Home page.

    Please note that this conference will be held in person only. Please do not register if you do not plan to attend in person.

    Title *

    First name *

    Family name *

    Job title *

    Organisation name *

    Type of organisation *

    Country *

    Do you have any dietary requirements or allergies? If so, please enter here

    Telephone*

    Email address*

    European DS Advanced Therapies Meeting

    When and where: 24th of March 2023 in Madrid

    After the success of the first edition, Dravet Syndrome Foundation Spain and the European Dravet Syndrome Advanced Therapies Working Group (EDSAT) are delight to organise the second edition of the European Dravet Syndrome Advanced Therapies (EDSAT) Meeting, a 1-day networking event satellite to the Dravet Syndrome Conference 2023.

    This international meeting will take place in person on Friday 24th of March 2023 in Madrid, Spain. The EDSAT Meeting will provide the latest updates on the Advanced Therapies in Medicinal Products (ATMPs) for Dravet syndrome. In addition, attendees will have the unique opportunity to exchange ideas and foster collaborations with key scientists and guest industry, clinical and regulatory experts in product and clinical development.

    The registration is free of charge, but mandatory for organisational reasons. Registration also includes free access to the networking dinner, in the evening of 23rd of March, 2023. However, to maximise networking opportunities, this event is limited to 50 attendees, who will be processed on a first-come, first-served basis. To encourage participation of usually underrepresented countries in Europe, travel grants will be offered to students and postdocs coming from those countries. The EDSAT Meeting will be open to students, early career scientists, leading investigators, policy makers and other professionals from the pharmaceutical and healthcare sector with the common goal of promoting Dravet syndrome research and patient access to ATMPs.

    The EDSAT Meeting 2023 will take place at the Official College of Nursing of Madrid (Spain), located in the former factory of the American sewing machine company Singer, an emblematic building of the 20th century.

    Breaks and lunch will take place in the Nursing History Museum of the Official College of Nursing in Madrid, which is the only nursing museum in all of Spain, receiving visitors from all over the world.

    As alraedy mentionted, registration will be free of charge, but mandatory for organizational reasons.

    Agenda

    08.30 – 09.00

    Welcome & Registration

    09.00 – 09.10

    Opening statements & Introduction to the program
    Chair: José Ángel Aibar,  Fundación Síndrome de Dravet

    09.10 – 09.55

    Research Talk Session I

    Short talk I
    tbc
    Short talk II
    tbc
    Short talk III
    tbc

    09.55 – 10.40

    Workshop 1: Existing ASMs for Dravet syndrome and related epilepsies

    Introduction to existing ASMs for Dravet syndrome and related epilepsies
    Heidrun Potschka, Ludwig-Maximilians-University Munich 

    Dynamic group discussions on existing ASMs for Dravet syndrome and related epilepsies
    All attendees

    Pooling of ideas & Conclusions
    EDSAT Group leaders

    10.40 – 11.00

    Poster Session & Networking Coffee Break

    11.00 – 11.30

    Research Talk Session II

    Flash talk I
    tbc

    Flash talk II
    tbc

    Flash talk III
    tbc

    11.30 – 12.30

    Workshop 2: Pros and cons of the different advanced therapy strategies for Dravet syndrome

    Introduction to the pros and cons of the different advanced therapy strategies for Dravet syndrome

    Gabriele Lignani, UCL Queen Square Institute of Neurology
    Rubén Hernández, CIMA Universidad de Navarra

    Dynamic group discussions on the pros and cons of the different advanced therapy strategies for Dravet syndrome
    All attendees

    Pooling of ideas & Conclusions
    EDSAT Group leaders

    12.30 – 14.00

    Poster Session & Networking Lunch

    14.00 – 14.45

    Expert Panel: New insights into the neuropathophysiology of Dravet Syndrome
    Chair: Massimo Mantegazza, Côte d’Azur University & CNRS

    14.45 – 15.15

    Poster Session & Networking Coffee Break

    15.15 – 15.45

    Research Talk Session III

    Short talk I
    tbc

    Short talk II
    tbc

    15.45 – 16.00

    Young Investigator Award
    José Ángel Aibar, Fundación Síndrome de Dravet

    16.00

    Close & thank-yous
    José Ángel Aibar, Fundación Síndrome de Dravet

    Venue

    The Dravet Syndrome Conference 2023 will take place at the Official College of Nursing of Madrid (Spain), located in the former factory of the American sewing machine company Singer, an emblematic building of the 20th century. The venue is located at Avenida de Menéndez Pelayo, 93, in the heart of the city and less than 10-minute walk away from Paseo del Prado and Atocha station.

    Breaks and lunch will take place in the Nursing History Museum of the Official College of Nursing in Madrid, which is the only nursing museum in all of Spain, receiving visitors from all over the world.

    Submit your Abstract and Apply for a Travel Grant

    Welcome to the abstract submission and travel grant application form. Abstracts that are sent via e-mail or fax will not be included in the abstract assessment process by the Scientific Organizing Committee.
    Please note that to ensure diversity we seek to allow only one oral platform lecture (short or flash) per presenting author. If the presenting author is different, more than one oral presentation can be submitted by institution.
    For technical problems or submission support, please contact [email protected].

    Twenty travel grants of max. 300 EUR will be awarded to PhD students and postdocs from Armenia, Bulgaria, Croatia, Czech Republic, Estonia, Georgia, Hungary, Latvia, Lithuania, Malta, Poland, Romania, Slovakia, Slovenia, Turkey, and Slovenia to cover travel and/or accommodation expenses to attend the meeting. Applicants will book their own travel tickets and accommodation, and send (i) a copy of the tickets/booking reservations, (ii) a copy of corresponding invoice(s) and (iii) the proof(s) of payment(s) to Dravet Syndrome Foundation Spain at [email protected] for reimbursement once the event has taken place.

    It is compulsory to submit an abstract to apply for a travel grant. Travel grants may be awarded to workshop attendees even if their abstract is not selected for oral presentation.

    Grants will be awarded on a first-come first-served basis. In case of travel grant budget remains, grants will be awarded to other PhD students and postdocs, again on a first-come first-served basis, until the budget is finalised. Therefore, all PhD students and postdocs are invited to apply for a grant!

    DEADLINES:
    Please, remember the following important dates:

    • Abstract Submission Deadline:  15th of January 2023 at 23:59 CET.
    • Email notification of Selected speakers: 27th of January 2023.
    • Reception of final presentation deadline: 17th of March 2023 at 23:59 CET.
    • Conference Date: 24th of March 2023.

    ABSTRACT SUBMISSION GUIDELINES
    Abstracts may be selected for poster and/or short (12 minutes of presentation plus 3 minutes for discussion) or flash (8 minutes of presentation plus 2 minutes for discussion) oral presentations. Abstracts should highlight original research or protocols on advanced therapy medicinal products (ATMPs) for Dravet syndrome or related disorders. If different abstract and presenting author, more than one abstract can be submitted per institution.

    Abstracts will be evaluated by the Scientific Organizing Committee, composed by members of the European Dravet Syndrome Advanced Therapies Working Group (EDSAT WG). The EDSAT WG is an alliance formed by leading European scientists in the field of ATMPs for Dravet syndrome and related disorders.

    For confidentiality reasons, only the title, authors and affiliations will be published in the online booklet. Full abstracts will only be published in the printed booklet that attendees will receive on the day of the workshop.

    AUTHORS AND FORMAT

    • Authors should indicate their oral presentation preference: short talk (15 minutes) or flash talk (10 minutes). The Scientific Committee reserves the right to decide on the final presentation type.
    • Abstracts with multiple authors can only be submitted once, by the presenting author.
    • The presenting author assumes full responsibility for the contents of the abstract and confirms that all other authors consent to the submission of the abstract.
    • All abstracts must be submitted and presented in English.
    • Abstracts must have the following structure: Introduction, Methodology, Results, Conclusions, and Acknowledgement/Funding, if applicable.
    • Abbreviations should be defined the first time they appear in the text, before being used as an abbreviation only. Please, do not define or use abbreviations in the title.
    • The abstract’s title can contain a maximum of 100 characters.
    • Abstracts should have between 1250 and 1500 characters. Title, authors’ names and affiliations are not included in this limit.
    • Tables, figures, or other graphics are not allowed during abstract submission.
    • Authors affiliations should be written correctly, using capital letters, and avoiding abbreviations.

    EVALUATION
    Special consideration will be given to:

    • Clarity in the exposition of the different sections.
    • Innovative potential.
    • Scientific impact and social relevance.
    • Soundness of the applied methodology.
    • Consistency between the obtained results and the proposed conclusions.

    Selected speakers will receive all information regarding time and format of their presentations in a separate e-mail after evaluation.

    If you face any problems during the submission process, contact us directly at [email protected].

    ABSTRACT AND TRAVEL GRANT SUBMISSION FORM

      Title *

      First name *

      Family name *

      Job title *

      Organisation name *

      Type of organisation *

      Country *

      Telephone *

      Email address *

      Title of the abstract (max. 100 characters) *

      Characters left: 100

      List of authors and affiliations *

      Text of the abstract, including introduction, methodology, results, conclusions, and funding if applicable (between 1250 and 1500 characters) *

      Characters left: 1500

      Oral presentation preference *

      Apply for travel grant? *

      Become a sponsor

      To learn about the EDSAT2023 sponsoring options, contact us at [email protected] or by phone at +34 722 307 252.

      Registration

      Attendance to this conference is free of charge, but mandatory for organisational reasons. You just need to fill in the fields below to register for the European Dravet Syndrome Advanced Therapies Meeting 2023, that will take place on next 24th of March 2023 in Madrid.  At no cost, the registration includes coffee and beverages, lunch, attendance to all sessions and the conference materials. However, to maximise networking opportunities, this event is limited to 50 attendees, who will be processed on a first come first served basis.
      For more information on this event, visit the Home page.

        Title *

        First name *

        Family name *

        Job title *

        Early career scientist? (up to 7 years after first doctoral degree)

        Organisation name *

        Type of organisation *

        Country *

        Do you have any dietary requirements or allergies? If so, please enter here

        Telephone*

        Email address*

        Would you like to attend as well the free networking dinner on the evening before the event?

        Reunión Anual de Familias

        Cuándo y Dónde: 25 de marzo de 2023 en Madrid

        Un año más y con mucho ilusión, la Fundación Síndrome de Dravet ya está preparando la Reunión Anual de Familias 2023, en la que podréis comprobar de primera mano los progresos de la Fundación y de la investigación en esta enfermedad, así como algunas de las novedades más relevantes en el plano social. Este encuentro nos ofrece además la oportunidad perfecta para encontrarnos e interactuar con otras familias que viven con la misma enfermedad a la misma vez que intercambiar experiencias, preocupaciones y esperanzas.

        La Reunión Anual de Familias volverá a tener lugar en Madrid, más concretamente el sábado 25 de marzo de 2023 en el Colegio Rafaela Ybarra, un centro educativo que cuenta con todas las instalaciones para que la reunión sea todo un éxito.

        El período de inscripción está abierto hasta el martes 31 de enero de 2023 a las 23.59 horas, cumplimentando el formulario de inscripción con los datos de aquellas personas del ámbito familiar que vayan a acudir a este encuentro (no es necesario incluir los datos de aquellos miembros de la familia que no vayan a asistir).

        Al igual que hicimos en nuestros últimos encuentros anuales, aunque aún estamos trabajando en definir el establecimiento donde nos alojaremos, la Fundación Síndrome de Dravet volverá a subvencionar y pagar gran parte del coste del alojamiento de aquellas familias de la Fundación que sean de fuera de Madrid y que efectivamente necesiten alojamiento para el fin de semana, con el objetivo de facilitar e incentivar la participación de todas las familias que componen la Fundación Síndrome de Dravet. También, nos encargaremos del catering necesario para la jornada del encuentro.

        Durante el encuentro anual, la Fundación pondrá en marcha un servicio de cuidadores y de actividades de ocio para los niños Dravet y sus hermanos. Además, contaremos con profesionales especializados y nos aseguraremos también de que se cumplan todas las medidas sanitarias necesarias.

        A pesar de que aún quedan unos meses para esta cita, ya estamos trabajando a fondo tanto en el programa como en el resto de detalles para que podamos disfrutar de un magnífico día junto con las demás familias Dravet que asistirán venidas de toda la geografía española y más allá.

        ¡Esperamos veros a todos!

        Agenda

        08.45 – 09.15

        Bienvenida a las familias

        09.15 – 09.45

        Inauguración y presentación del encuentro
        José Ángel Aibar, Fundación Síndrome de Dravet

        09.45 – 10.00

        Presentación de nuevas familias
        Amparo Bastos, Fundación Síndrome de Dravet

        10.00 – 10.20

        La Fundación Síndrome de Dravet: Catalizador de la investigación del síndrome de Dravet
        José Ángel Aibar, Fundación Síndrome de Dravet

        10.20 – 10.40

        Iniciativas y proyectos de investigación de la Fundación Síndrome de Dravet en marcha
        Tomás García-Ferrer, Fundación Síndrome de Dravet

        10.40 – 11.00

        Proyecto Fortalezas y dificultades en familias con síndrome de Dravet
        Itziar Alonso-Arbiol, Universidad del País Vasco

        11.00 – 11.30

        Descanso

        11.30 – 12.00

        Proyecto DANDA: Evaluación de los trastornos neuropsiquiátricos asociados al síndrome de Dravet
        Susana Boronat, Hospital de la Santa Creu i Sant Pau

        12.00 – 12.30

        Investigación: Fármacos en caminos
        Vittoria Spinosa, Fundación Síndrome de Dravet

        12.30 – 12.55

        Charla de investigación I
        tbc

        12.55 – 13.20

        Charla de investigación II
        tbc

        13.20 – 13.40

        Charla de investigación III
        tbc

        13.40 – 14.00

        Charla de investigación IV
        tbc

        14.00 – 16.00

        Comida

        16.00 – 16.30

        Los trastornos del sueño en el síndrome de Dravet
        Víctor Soto, Hospital Infantil Universitario Niño Jesús

        16.30 – 17.15

        El papel de la enfermería escolar
        Natividad López Langa, AMECE

        17.15 – 17.35

        Programa de Apoyo Psicosocial de la Fundación Síndrome de Dravet
        Carla Bonafé, Neuropsicóloga

        17.35 – 18.00

        Descanso

        18.00 – 18.30

        La experiencia de una madre y psicóloga
        Ares Regué, Neuropsicóloga y mamá de Athenea

        18.30 – 18.45

        Premios Dravet 2023
        José Ángel Aibar, Fundación Síndrome de Dravet

        18.45 – 19.00

        Clausura del encuentro
        José Ángel Aibar, Fundación Síndrome de Dravet

        Lugar del encuentro

        La Reunión Anual de Familias 2023 tendrá lugar en el Colegio Rafaela Ybarra, en Avda. Rafaela Ybarra, 73 de Madrid.

        Este colegio es un centro integrado que imparte enseñanzas desde Educación Infantil hasta Ciclos Formativos de Formación Profesional y Bachillerato. La titularidad del centro la ostentan las religiosas de los Ángeles Custodios y su nombre se debe a Rafaela Ybarra, beatificada por el Papa Juan Pablo II en 1984 por su labor con la infancia y juventud femenina.

        Este centro educativo cuenta con todas las instalaciones necesarias para acoger nuestro encuentro de familias.

        Colegio Rafaela Ybarra Madrid

        Alojamiento

        Un año más, la Fundación Síndrome de Dravet volverá a subvencionar y pagar gran parte del coste del alojamiento de aquellas familias de la Fundación que sean de fuera de Madrid y que efectivamente necesiten alojamiento para el fin de semana, con el objetivo de facilitar e incentivar la participación de todas las familias que componen la Fundación Síndrome de Dravet.

        Indícalo en el formulario de inscripción para que lo podamos tener en cuenta, de tal manera que te mantengamos informado sobre el alojamiento en el que nos quedaremos las familias de la Fundación Síndrome de Dravet que asistamos al encuentro.

        Hotel

        Conviértase en patrocinador

        Como organización de pacientes, dependemos de la generosidad de las empresas patrocinadoras para poder llevar a cabo nuestras actividades fundacionales.
        Póngase en contacto con nosotros en [email protected] e infórmese de las diversas opciones de patrocinio.

        Inscripción

        La asistencia a esta conferencia es gratuita, pero obligatoria por motivos organizacionales. Sólo tienes que rellenar el formulario de abajo para inscribirte en la Reunión Anual de Familias 2023 de la Fundación Síndrome de Dravet, que tendrá lugar el próximo 25 de marzo de 2023 en Madrid. La inscripción es gratuita e incluye el café y las bebidas, la comida, la asistencia a todas las sesiones, el material de la conferencia y el servicio de cuidadores para las personas con síndrome de Dravet y sus hermanos.
        Para más información sobre este evento, visite la página de inicio.

          Nombre y apellidos del progenitor1

          Nombre y apellidos del progenitor2

          Número total de asistentes a la Reunión Anual de Familias*

          Nombre del afectado

          Fecha de nacimiento del afectado

          Nombre hermano1

          Fecha de nacimiento hermano1

          Nombre hermano2

          Fecha de nacimiento hermano2

          Nombre hermano3

          Fecha de nacimiento hermano3

          Nombre hermano4

          Fecha de nacimiento hermano4

          ¿Necesitaréis alojamiento?*

          Fecha de llegada al hotel*

          Hora de llegada al hotel*

          Fecha de salida del hotel*

          Hora de salida del hotel*

          Observaciones/Comentarios

          Teléfono de contacto*

          Correo electrónico*

          Proud member of:

          ¡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.

          ¿Te has descargado ya tu Dorsal Solidario 2022?

          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.