The IDEA League is an international partnership of parents and professionals united in the purpose of creating greater awareness and understanding of Dravet syndrome and the spectrum of related genetic forms of epilepsy. The IDEA League is a nonprofit organization that was founded by Dravet syndrome parents in October 2005; incorporated in the state of Minnesota, USA, in February 2006; and designated a 501(c)3 tax-exempt public charity by the US Internal Revenue Service in November 2006. In order to meet diverse local needs, the IDEA League began to establish regional affiliates, starting with the IDEA League UK in 2008 and the IDEA League France in 2009. Affiliates in Canada, the Netherlands, Italy, and the region of the northern Balkan states (former Yugoslavia) are in development.

 

We envision improved outcomes for individuals affected by Dravet syndrome and related forms of epilepsy. Our IDEAL is a cure.

 

The IDEA League promotes awareness of and research for Dravet syndrome and related forms of epilepsy and provides resources and support to improve the quality of life for affected individuals and families. We strive to be the most up-to-date and accurate information source for Dravet syndrome and related conditions for both families and professionals.

 

Outreach and Support for Families. The IDEA League strives to 1) foster adaptation, 2) relieve isolation, and 3) provide information which will assist families in making educated decisions regarding the management of their child’s condition and improve the quality of life for their child and family. The IDEA League works to provide families with: mentorship, optimism, opportunities to participate in research, and resources to help them obtain access to appropriate treatments.

 

Education and Resources for Physicians. The IDEA League strives to improve recognition and understanding of Dravet syndrome that will: 1) prevent misdiagnosis, costly unnecessary medical procedures, and the use of medications contraindicated for this syndrome, which may increase seizures, further delay development and aggravate co-morbid conditions; and 2) promote early diagnosis so that children have the opportunity to be placed on a proper treatment protocol and engage in appropriate therapies to increase their chances for a better outcome.

 

Research. The IDEA League funds research that will lead to improved understanding regarding, and treatment and cure for Dravet syndrome.

 

Our membership currently includes more than 800 families from 52 countries representing over 600 children and adults with Dravet syndrome or Generalized Epilepsy with Febrile Seizures Plus (GEFS+). Within the US, there are over 400 family memberships from 45 states and the District of Columbia representing over 350 affected children. Outside of the US, there are over 300 member families representing over 250 patients with Dravet syndrome. We have more than 330 professional or organizational memberships, over 230 of which are from within the US. Participation in the IDEA League allows members to be part of a global effort to improve the outcomes of children with Dravet syndrome.