Studies Looking for Participants

There is little governmental funding available for epilepsy research in general, so for rare diseases such as Dravet syndrome funding is almost non-existent.  Historically, we have seen that the patient community funds and drives rare-disease research.  The Dravet Syndrome Foundation was formed to guarantee that monies raised would be used specifically for research that would impact those affected by Dravet syndrome.  Thanks to the outpouring of support, the DSF has allocated over $1,000,000 to Dravet-specific research projects.  Our supporters, families, researchers, and nonprofits we partner with, are all working together for the same goal – better treatments and a CURE for Dravet syndrome.

 

The Dravet Syndrome Foundation is always working to promote and fund research while raising awareness and knowledge of Dravet syndrome and associated epilepsies.  Although science may not always move at the pace that our community would like, our goal is to assure that lack of funding is not what slows down the timeline.

 

In accordance with our mission, the Dravet Syndrome Foundation focuses its work and funding in four areas:

 

Research Grant Program

This program offers grants for research directly related to Dravet syndrome and associated disorders.  Our research grants fund initial research hypotheses that have not been fully explored.  The results extracted from this type of research will help bring untested research to the point that it can qualify for larger governmental funding. Research applications are judged principally on novelty of the hypotheses, innovative approaches with a direct relevance and application to Dravet syndrome and related epilepsies, scientific quality, strength of approach, and likelihood of success.  Grant Awardees are required to give updates on their work throughout the grant cycle and present their findings at our annual Research Roundtable meeting.

 

 

 

International Dravet Syndrome/Ion Channel Patient Registry (IICEPR)

This registry (co-funded by the DSF & ICE Alliance) is owned and maintained by the University of Michigan and Miami Children’s Hospital, but is available to all interested researchers.  Basic information and genetic test results will be collected on individuals with Dravet syndrome and related epilepsies, worldwide. The registry follows guidelines approved by the Institutional Review Boards of both the University of Michigan and Miami Children’s Hospital, as set forth by the U.S. Department of Health and Human Services. The establishment of this registry will expedite future clinical trials and will serve to improve communication of ideas amongst interested researchers, as well as assure rapid distribution of any new information that may benefit patients and their families.

 

Download Brochure

Visit Registry

 

 

DSF Annual Research Roundtable

This annual meeting, held at the American Epilepsy Society (AES) Conference, brings together researchers, geneticists, neurologists, and other professionals with a strong interest in Dravet syndrome and related epilepsies.  The purpose of this roundtable is to establish a “research roadmap” to guide the DSF in funding research projects that address the critical challenges of this syndrome and which will offer the most promising breakthroughs at the fastest pace. By allowing this consortium of specialists to prioritize research needs, the DSF can facilitate the development and implementation of better treatment options.

 

 

International Patient Assistance Grant Program

This program offers grants to patients with Dravet syndrome and associated epilepsies for necessary medical expenses associated with these conditions that are not covered through private insurance or other assistance programs.  The program is open to all patients worldwide who meet the program requirements.  Three percent of donations, after expenses, are allocated to this program.

 

PAG Overview - English

PAG Application - English

 

PAG Overview - Spanish   

PAG Application - Spanish