Dravet syndrome community

Here's a selection of information from patients & professionals to better understand Dravet syndrome.

Dravet syndrome resources

Dravet syndrome Frequently Asked Questions

Here are some of the most frequently asked questions and their answers:

If you have a question about living with Dravet,  please email your question to: faq@rarediseasecommunities.org and we will put it to the specialists who have agreed to answer your questions from time to time.

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What therapies should my child have?

Many children with Dravet have Speech, Occupational and Physical therapy. It is best to check with your doctor to determine what therapy or therapies would best benefit your child.

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How do I find resources?

Many of the resources need, you can find on our website, www.dravet.org. Another site to look for resources is www.hopeforsupport.com.

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When should we have our first IEP (Individual Educational Plan) meeting?

A child with special medical needs should have an IEP as soon they enroll in school.

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My child is SCN1A negative, does that mean that they do not have Dravet?

A negative SCN1A test does not rule out a Dravet Spectrum Disorder.

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How is Dravet diagnosed?

Dravet can be diagnosed clinically, where the doctor looks at the child’s history, family history, EEG, seizure and developmental history. The SCN1A test can also be helpful in diagnosing Dravet.

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Dravet syndrome Patient Groups

These are patient organisations that have experience and expertise in Dravet syndrome. They are supporters of this website. Contact them for more information on their activities.

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  • Dravet Syndrome Foundation

    The Dravet Syndrome Foundation is a 501(c)3 non-profit public charity whose mission is to aggressively raise research funds for Dravet syndrome and related epilepsies, while providing support to affected individuals and families. In line with our mission we focus our efforts on four programs: Research Grant Award Program; International Dravet Syndrome/Ion Channel Patient Registry (IICEPR); International Patient Assistance Grant Program (IPAG); and the Annual Research Roundtable.

    Contact Dravet Syndrome Foundation

  • Dravet Syndrome UK

    Dravet Syndrome UK is a registered charity dedicated to improving the lives of those affected by Dravet Syndrome in the United Kingdom. This is done through 3 main aims: *Funding medical research into Dravet Syndrome and other related genetic sodium channel epilepsies. *To advance the education of the medical community in the UK with regards to Dravet Syndrome, therefore prompting accurate and early diagnosis. *To promote the physical and mental health of sufferers of Dravet Syndrome and their families within the UK through the provision of financial assistance, support, education and practical advice.

    Contact Dravet Syndrome UK

  • Dravet.org

    Dravet.org has served as a powerful global partnership of parents and medical experts united in the goal of treating children with Dravet syndrome and the spectrum of related forms of epilepsy caused by failure or defective functions of ion channels.

    Contact Dravet.org

  • Dravet Syndrome Foundation EU

    La Fundación Síndrome de Dravet es una entidad privada sin ánimo de lucro, que supondrá un punto de inflexión en la vida de todos los enfermos de Síndrome de Dravet de España y de otros afectados que padecen epilepsias del espectro de las canalopatías epilépticas GEFS+, FS+, Doose y otras epilepsias refractarias relacionadas con los canales de sodio, potasio y calcio del cerebro. Con su creación se pretende establecer una estructura organizativa fuerte, dinámica y resolutiva que fomente la investigación nacional e internacional del síndrome. En 2004 se creó la Fundación Síndrome de Dravet en Estados Unidos, mediante un movimiento asociativo de padres que buscaban la potenciación de la investigación con el fin de encontrar una cura para el síndrome. Desde entonces, la Fundación ha dedicado más de 300.000 euros para la financiación de diferentes proyectos de investigación. Actualmente es responsable de la gestión de más de un millón de euros en proyectos. Es posible encontrar más información sobre los proyectos que la Fundación aborda aquí A comienzos de 2010 la Fundación es consciente de la necesidad de realizar un esfuerzo internacional para poder encontrar una solución al problema. En la actualidad, la actividad investigadora está disgregada en varios países y la necesidad de coordinar esfuerzos en la misma dirección se hace evidente. Por este motivo la Fundación decide llevar sus operaciones a un ámbito internacional y encuentra un aliado perfecto en un grupo de familias residentes en Europa que quieren lanzar las actividades a este lado del atlántico. Y así es como nace Fundación Síndrome de Dravet, delegación en España.

    Contact Dravet Syndrome Foundation EU

  • Gruppo Famiglie Dravet Italy

    AIUTARE LA RICERCA ATTRAVERSO LA RACCOLTA DI FONDI E CREARE UNA RETE DI CONTATTI FRA LE FAMIGLIE Il "Gruppo Famiglie Dravet" fa parte della FIE (Federazione Italiana Epilessie) che riunisce 18 associazioni distribuite nelle varie regioni d'Italia.

    Contact Gruppo Famiglie Dravet Italy

  • Dravet Italia Onlus

    La Dravet Italia ONLUS nasce con l’intento di agire attivamente per migliorare la qualità della vita dei bambini affetti da questa grave forma di epilessia: la sindrome di Dravet. Medici esperti e genitori si uniscono con questo obiettivo. Questa collaborazione vitale ha già dato vita, in ambito internazionale ad esperienze che hanno contribuito a molti progressi nella comprensione e nel trattamento della sindrome. Il nostro scopo è quello di sostenere la ricerca, perché le speranze diventino realtà. Per aiutarci, sostenete le nostre iniziative.

    Contact Dravet Italia Onlus

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Dravet syndrome Documents

Resources, documents and detailed informations on Dravet syndrome. In this section you can download brochures, ask for printed documents or find useful links.

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Dravet syndrome Articles

Most recent articles:

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Conference Brings Together Families to Share, Connect, Learn (EN)

About 200 participants, some from as far away as Australia and Israel, attended the Aug. 26-29 conference at the Hyatt Regency in Greenwich, Connecticut USA. Sixteen speakers presented information ...

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NORD Rare Disease Database: Dravet syndrome (EN)

Dravet syndrome is a rare genetic epileptic encephalopathy (dysfunction of the brain) with onset during the first year in an otherwise healthy infant. Mutations of the SCN1A gene cause 79% of diagn...

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DRAVET SYNDROME UK RESEARCH GRANT AWARD 2011

Dravet Syndrome UK are delighted to be funding this 18 month research project to the sum of £39,000.
By using exome sequencing the project aims to find answers to the following questions:
...

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2010 DSF Research Roundtable Overview (EN)

On December 2nd, 2010,  the Dravet Syndrome Foundation hosted a Research Roundtable Meeting in conjunction with the American Epilepsy Society annual meeting. Afterward, the participants expres...

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Dravet syndrome Events

Most recent events:

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  • May 2012

  • 6th European Conference on Rare Diseases & Orphan Products (ECRD 2012)

    From 23 to 25 May 2012

    MCE Conference Centre in Brussels, Belgium

    More info

  • June 2012

  • European Human Genetics Conference 2012

    From 23 to 26 June 2012

    Its aims are to promote research in basic and applied human and medical genetics, to ensure high standards in clinical practice and to facilitate contacts between all persons who share these aims, particularly those working in Europe. The Society will encourage and seek to integrate research and its translation into clinical benefits and professional and public education in all areas of human genetics.

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  • August 2012

  • Dravet.org’s 2012 Family Medical Conference

    From 16 to 19 August 2012

    2012 Family Medical Conference will be held Thursday, August 16 through Sunday, August 19 in Bloomington, Minnesota. Special guest: Dr. Charlotte Dravet

    More info

  • November 2012

  • 62nd Annual Meeting of the American Society of Human Genetics (ASHG)

    From 6 to 9 November 2012

    "We have 24 invited slots available and anticipate receiving over 120 proposals. We encourage you to provide as much information as possible in order to assist the Program Committee in their decision making. The ASHG 2012 Program Committee encourages the submission of debate or panel style sessions on thought-provoking or controversial topics."

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  • UK Dravet specific Family & Professional Conference

    On 17 November 2012

    Dravet Syndrome UK are delighted to be hosting the 2nd UK Dravet specific conference. This one day event is open to both professionals and family members and will feature presentations on early intervention, medications, schooling, further education and alternative treatments. A full itinerary will be available from March 2012, when registration opens.

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La sindrome di Dravet community news

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