Mission : We are an organization that aims to find an effective treatment for Dravet Syndrome.

We use innovation to accelerate the search for an effective drug, removing barriers between researchers and industry. We want to find a drug within three years that eliminates the symptoms and allows us to preserve the cognitive state of our patients until we are able to find a definitive solution for the disease.

Vision : A world without Dravet syndrome.

We want a world where suffering from a rare disease does not mean condemnation. We want a world in which scientific information can flow without barriers, a world in which patients, physicians, researchers and industry work together to support rare diseases. We want a world where patients suffering from a rare disease are not alone. We want our work to also help patients suffering from other diseases. We do not want our suffering to be in vain.

Organization primary focus : Dravet syndrome: Promotion of Research, Patient support, Awareness

Affiliation : PFMD - EURORDIS - ARM - REN - DSEF - FEDER - FEP