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Jornadas Científicas y Familiares 2022

Scientific and Family Days 2022

Dravet Syndrome Conference 2022

When and where: 31st of March 2022 in Madrid

The Dravet Syndrome Conference 2022 will take place in person on Thursday 31st of March 2022 in Madrid, Spain, and registration is free of charge but mandatory for organisational reasons.

We are proud to re-engage this meeting in person, which will bring together a range of professionals from all over the world including clinicians, researchers, and professionals from the pharmaceutical industry committed to improving the lives of people with epilepsy.

The Dravet Syndrome Conference 2022 aims to update professionals on diagnosis, management, available treatments, and therapies in development, and to create an ideal platform for discussion and exchange between scientists, physicians, regulators, patient representatives, and industry partners.

During this conference, presentations will include the latest advances in the diagnosis and treatment of Dravet syndrome, including both new drugs available and new treatments in development. This event will therefore present a remarkable opportunity for scientific exchange and networking.

The organising committee therefore encourages all stakeholders in health and medicines R&D 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 2022 will be held at the Great Amphitheatre of the Illustrious Official College of Physicians of Madrid, located less than a 5-minute walk away from Paseo del Prado and Atocha station.

Covid-19 Safety Information
In accordance with the regulations in force in the Community of Madrid for the organisation of congresses and events of this type, attendees must follow the basic preventive measures for Covid-19, which include, among others, the mandatory use of masks and hand sanitisers. As an option, SARS-CoV-2 rapid antigen tests will be available to attendees free of charge, although they will not be compulsory for access to the event.
As local regulations may change, more information will be provided closer to the date.

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 – 09.30

Dravet syndrome by a parent
Alicia de Santos, Raúl’s mom

09.30 – 10.50

Dravet syndrome and current treatment strategies
Chair: Lieven Lagae, KU Leuven

Defining Dravet syndrome for precision medicines

Ingrid Scheffer, University of Melbourne

New treatment algorithm for Dravet syndrome
Lieven Lagae, KU Leuven

Management of acute seizures and emergency protocol
Helen Cross, Great Ormond Street Institute of Child Health

Treating Dravet syndrome beyond seizures
Stéphane Auvin, Hôpital Robert Debré

10.50 – 11.20

Networking Coffee Break & Industry Exhibition

11.20 – 12.40

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

Transition from paediatric to adult care in patients with developmental and epileptic encephalopathies
Danielle Andrade, University of Toronto

Dissecting Dravet syndrome in adults
Vicente Villanueva, Hospital La Fe

Real-world data on antiseizure drugs for adults with Dravet syndrome
Catherine Chiron, Necker Enfants Malades University Hospital

Open discussion: Paediatric and adult neurologists
All previous physicians

12.40 – 13.00

Charlotte Project: Consensus for PROs management in Dravet Syndrome
Eduardo Junco, Spain Medical Director, Zogenix
José Ángel Aibar, Fundación Síndrome de Dravet
Ángel Aledo, Hospital Ruber Internacional

13.00 – 14.10

Networking Lunch Break & Industry Exhibition

14.10 – 15.00

Looking to the future treatment of Dravet syndrome
Chair: Franck Kalume, University of Washington

Update on the research pipeline for Dravet syndrome
Elena Cardenal, Fundación Síndrome de Dravet

Clinical update on STK-001 for the treatment of Dravet syndrome
Javier Avendaño, Stoke Therapeutics

Clinical update on ETX101 for the treatment of Dravet syndrome
Salvador Rico, Encoded Therapeutics

15.00 – 15.20

The power of patient groups in drug development
Elena Cardenal, Fundación Síndrome de Dravet

15.20 – 15.50

Networking Coffee Break & Industry Exhibition

15.50 – 16.30

FSD 2021 Funded Projects in Advanced Therapies
Chair: Hugues Abriel, University of Bern

Reduction of inflammatory responses against adenoviral vectors to improve safety and efficacy of gene therapy for Dravet syndrome
Rubén Hernández-Alcoceba, CIMA – University of Navarra

A novel homeostatic response boosted as therapy for Dravet syndrome: treatment with nasal application of engineered cholecystokinin
Massimo Mantegazza, IPMC CNRS Côte d’Azur

16.30 – 16.55

Open discussion on the future for Dravet syndrome and related disorders
Selected previous speakers

16.55 – 17.00

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

With the scientific endorsement of:

European Reference Network EpiCARE

European Paediatric Neurology Society

European Academy of Neurology

Venue

The Dravet Syndrome Conference 2022 will take place at the Great Amphitheatre of the Illustrious Official College of Physicians of Madrid (Spain). The venue is located at Calle de Santa Isabel, 51, in the heart of the city and less than a 5-minute walk away from Paseo del Prado and Atocha station.

The Great Amphitheatre is the main lecture hall of the venue, is part of a building constructed in 1831, and declared as a Cultural Heritage Asset.

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 fundraising@dravetfoundation.eu and find out our various sponsoring options!

Sponsors

Platinum sponsorship

Gold sponsorship

Silver sponsorship

Bronze sponsorship


More coming soon!

With the scientific endorsement of:

European Reference Network EpiCARE

European Paediatric Neurology Society

European Academy of Neurology

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 2022, that shall take place on the 31st of March 2022 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 *

    Telephone*

    Email address*

    With the scientific endorsement of:

    European Reference Network EpiCARE

    European Paediatric Neurology Society

    European Academy of Neurology

    European DS Advanced Therapies Meeting

    When and where: 1st of April 2022 in Madrid

    Dravet Syndrome Foundation Spain and the Dravet Syndrome Advanced Therapies European Working Group (DS ATEWG), formed by top scientist in the field of advanced therapies for Dravet syndrome and related disorders, organise the first edition of the European Dravet Syndrome Advanced Therapies (EDSAT) Meeting, a 1-day satellite meeting to the Dravet Syndrome Conference 2022.

    This meeting will take place in person on Friday 1st of April 2022 in Madrid, Spain, and registration is free of charge but mandatory for organisational reasons. Registration also includes free access to the networking dinner the evening before. However, to maximise networking opportunities, this event is limited to 50 attendees, who will be processed on a first-come, first-served basis.

    In November 2020, the Dravet Syndrome Foundation Spain launched a pioneer and international initiative to bring together European experts in advanced therapies for Dravet syndrome, the DS ATEWG. Through a scientific and multidisciplinary forum focused on collaboration and cooperation, this initiative aims to remove barriers between institutions to advance fundamental and translational science in Dravet syndrome for advanced therapies.

    This international networking event, to be held in Madrid, Spain, on Friday 1st of April 2022, will provide an excellent opportunity to meet friends and colleagues, foster new relationships and collaborations, and develop strategies for efficient and productive scientific outcomes.

    Scientists will share first-hand information about their most recent advances in advanced therapies and Dravet syndrome research. In addition, attendees will learn from and discuss with guest industry regulatory and clinical experts in product and clinical development.

    Overall, EDSAT Meeting will be an ideal platform for exchange and networking, where students, early career scientists, leading investigators, policy makers, pharmaceutical industry and other sectors in healthcare converge and collaborate for the common goal of promoting Dravet syndrome research and patient access to advanced therapies.

    The EDSAT Meeting will be held at the Gregorio Marañón lecture hall of the Illustrious Official College of Physicians of Madrid, located less than 5-minute walk away from Paseo del Prado and Atocha station, and has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575.

    Covid-19 Safety Information
    In accordance with the regulations in force in the Community of Madrid for the organisation of congresses and events of this type, attendees must follow the basic preventive measures for Covid-19, which include, among others, the mandatory use of masks and hand sanitisers. As an option, SARS-CoV-2 rapid antigen tests will be available to attendees free of charge, although they will not be compulsory for access to the event.
    As local regulations may change, more information will be provided closer to the date.

    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 – 09.40

    Research Talk Session I

    SCN1A variants associated with Dravet syndrome and other seizure disorders
    Shraddha Dubey, SIB Swiss Institute of Bioinformatics
    Spectral power changes as acute biomarkers in Dravet treatment
    Shir Quinn, Tel Aviv University
    SCN1AR613X: A novel open-access mouse model for Dravet syndrome research
    Anat Mavashov, Tel Aviv University

    09.40 – 10.40

    Workshop 1: Dravet Syndrome Research Models

    Introduction to Dravet syndrome research models
    Rajvinder Karda, UCL

    Dynamic group discussions on Dravet syndrome models
    All attendees

    Pooling of ideas & Conclusions
    EDSAT Group leaders

    10.40 – 11.00

    Networking Coffee Break

    11.00 – 11.30

    Research Talk Session II

    dCas9-Based Scn1a Gene Activation as a treatment for Dravet Syndrome
    Simona Bagnasco, Ospedale San Raffaele

    A novel homeostatic response of CCK+ GABAergic neurons boosted as therapeutic approach
    Evgeniia Rusina & Massimo Mantegazza, CNRS and University Côte d’Azur

    Targeting GABA switch rescues sociability and cognition in a Scn1a+/- mouse model of Dravet syndrome
    Isabelle Léna, University Côte d’Azur, Institute of Molecular and Cellular Pharmacology (IPMC)

    A workflow for rare disease drug discovery using machine-readable pathways
    Friederike Ehrhart, Maastricht University

    The added value of patient collaboration in research and development
    Rob Pleticha, admedicum

    11.30 – 12.30

    Workshop 2: Advanced Therapy Medicinal Products Approaches for Dravet Syndrome

    Introduction to advanced therapy medicinal products approaches for Dravet syndrome
    Vania Broccoli, San Raffaele Scientific Institute

    Dynamic group discussions on advanced therapy medicinal products approaches for Dravet syndrome
    All attendees

    Pooling of ideas & Conclusions
    EDSAT Group leaders

    12.30 – 13.30

    Networking Lunch

    13.30 – 14.30

    Expert Panel: Moving from the lab to the clinic
    César Hernández, Spanish Medicines Agency
    Danielle Andrade, University of Toronto
    Franck Kalume, University of Washington
    Javier Avendaño, Stoke Therapeutics
    Lieven Lagae, KU Leuven
    Salvador Rico, Encoded Therapeutics

    14.30 – 15.00

    Networking Coffee Break

    15.00 – 15.30

    Research Talk Session III

    Temporal manipulation of Scn1a gene reveals its essential role in postdevelopmental age
    Linda Serra, San Raffaele Hospital

    Scn1a gene reactivation after symptoms onset rescues seizures, behavioural deficits and altered gene
    Simone Brusco, Istituto Di Neuroscienze – CNR

    Adenovirus-mediated expression of NaV1.1 ameliorates Dravet syndrome epilepsy in mice
    Saja Fadila, Tel Aviv University

    15.30 – 15.35

    Young Investigator Award, Sponsored by Encoded
    José Ángel Aibar, Fundación Síndrome de Dravet

    15.35 – 15.40

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

    Venue

    The Dravet Syndrome Conference 2022 will take place at the Gregorio Marañón lecture hall of the Illustrious Official College of Physicians of Madrid (Spain). The venue is located at Calle de Santa Isabel, 51, in the heart of the city and less than 5-minute walk away from Paseo del Prado and Atocha station.

    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 research@dravetfoundation.eu.

    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 research@dravetfoundation.eu 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:  13th 22nd of February 2022 at 23:59 CET.
    • Email notification of Selected speakers: 1st of March 2022.
    • Reception of final presentation deadline: 27th of March 2022 at 23:59 CET.
    • Conference Date: 1st of April 2022.

    ABSTRACT SUBMISSION GUIDELINES
    Abstracts may be selected for short (8 minutes of presentation plus 2 minutes for discussion) or flash (3 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 Dravet Syndrome Advanced Therapies European Working Group (DS ATEWG). The DS ATEWG 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 (10 minutes) or flash talk (5 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 research@dravetfoundation.eu.

    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

      This Networking event has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575.

      To learn about the EDSAT2022 sponsoring options, contact us at fundraising@dravetfoundation.eu or by phone at +34 722 307 252.

      Sponsors

       

      More coming soon!

      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 2022, that will take place on next 31st of March 2022 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 *

        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: 2 de abril de 2022 en Madrid

        Tras unos meses donde la pandemia nos lo ha hecho imposible, la Fundación Síndrome de Dravet ya está preparando con mucha ilusión la Reunión Anual de Familias 2022, 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 permitirá también tener la oportunidad de encontrarnos e interactuar con otras familias que viven con la misma enfermedad e intercambiar experiencias, preocupaciones y esperanzas.

        Un año más, la volveremos a realizar en Madrid, más concretamente el sábado 2 de abril de 2022 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 domingo 27 de febrero martes 1 de marzo de 2022 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 dos 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 para los niños Dravet y sus hermanos. Además, también contaremos con un servicio de ambulancia y personal médico en el caso de que sea necesario. Nos aseguraremos también de que se cumplan todas las medidas sanitarias necesarias y proveeremos a todos los asistentes con un test de antígenos rápido COVID-19.

        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.

        ¡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 – 10.25

        La Fundación Síndrome de Dravet en tiempos de pandemia
        José Ángel Aibar, Fundación Síndrome de Dravet

        10.25 – 10.50

        Investigación: Fármacos en camino
        Elena Cardenal, Fundación Síndrome de Dravet

        10.50 – 11.00

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

        11.00 – 11.20

        Descanso

        11.20 – 11.50

        La historia de estiripentol para el síndrome de Dravet
        Susana Boronat, Hospital de la Santa Creu i Sant Pau

        11.50 – 12.20

        La historia de cannabidiol para el síndrome de Dravet
        Víctor Soto, Hospital Infantil Universitario Niño Jesús

        12.20 – 13.00

        La historia de fenfluramina para el síndrome de Dravet
        Lieven Lagae, KU Leuven

        13.00 – 13.30

        Actualización clínica de STK-001 para el tratamiento del síndrome de Dravet
        Javier Avendaño, Stoke Therapeutics

        13.30 – 14.00

        Actualización clínica de ETX101 para el tratamiento del síndrome de Dravet
        Salvador Rico, Encoded Therapeutics

        14.00 – 15.30

        Comida

        15.30 – 16.00

        Primeros auxilios: Reanimación cardiopulmonar
        Julián Lara, Hospital Universitario Puerta de Hierro

        16.00 – 16.30

        Implicaciones odontológicas en el síndrome de Dravet
        Irene María González Aroca

        16.30 – 17.00

        Nueva ley de apoyo a las personas con discapacidad
        Bosco García de Viedma,  Ramón C. Pelayo Abogados

        17.00 – 17.30

        Programa Pequeño Deseo
        Cristina Pozo, Fundación Pequeño Deseo

        17.30 – 18.00

        Speed Networking

        18.00 – 18.40

        Cómo mejorar la resiliencia
        Sergio Saiz, Coach de Vida

        18.40 – 18.50

        Premios Dravet 2022
        José Ángel Aibar, Fundación Síndrome de Dravet

        18.50 – 19.00

        Clausura del encuentro
        José Ángel Aibar, Fundación Síndrome de Dravet

        Lugar del encuentro

        La Reunión Anual de Familias 2022 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 fundraising@dravetfoundation.eu e infórmese de las diversas opciones de patrocinio.

        Patrocinadores

        Platinum sponsorship

        Gold sponsorship

        ¡En breve!

        Silver sponsorship

        Bronze sponsorship

        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 2022 de la Fundación Síndrome de Dravet, que tendrá lugar el próximo 2 de abril de 2022 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 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 research@dravetfoundation.eu.

          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 research@dravetfoundation.eu 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 research@dravetfoundation.eu before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

          Personal Data
          Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation 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 research@dravetfoundation.eu. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

          Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

          Photography
          The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. 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 research@dravetfoundation.eu.

          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 research@dravetfoundation.eu 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 research@dravetfoundation.eu before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

          Personal Data
          Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation 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 research@dravetfoundation.eu. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

          Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

          Photography
          The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. 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.