Raising Hope & Changing Lives
Through Research

When a group of parents started the Dravet Syndrome Foundation in 2009, there were no treatments specifically for Dravet syndrome. These parents set their sights high — to advance understanding of this little-known disease, to create new treatments and specialized care for their children, and to find a cure.

In the ensuing years, the fundraising and commitment of the Dravet syndrome community has enabled DSF to support fundamental research in the laboratory that has led to groundbreaking discoveries. By expanding our knowledge of the underlying biology of the disease, researchers have paved the way for creating new treatments.

DSF’s steadfast commitment to advancing Dravet syndrome research, as well as our community’s engagement throughout the clinical trial and drug development process has helped enable three new treatments for the disease, with several additional clinical trials already underway or soon starting. We have made incredible progress, including the approvals by the U.S. Food and Drug Administration (FDA) of Diacomit® (stiripentol) Epidolex® (cannabidiol), and Fintepla® (fenfluramine).

The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.

We Understand

  • The ongoing need to fund innovative research.
  • The urgency in finding better treatments.
  • The motivation of our donors to make an impact specifically in the fields of Dravet syndrome and related epilepsies.
  • The importance of transparency and accountability of not only our organization, but the researchers that we fund.
  • The need for global collaboration in order to find a cure.

Donor Confidence

DSF is proud to be a Platinum Level Participant on the GuideStar Exchange,
demonstrating our commitment to financial transparency.

It is the goal of DSF that donors have the highest level of confidence when making contributions to the foundation.

It is our intention to provide you with that confidence by sharing the following information. If you have any questions or concerns, please don’t hesitate to email our Executive Director or our general e-mail, [email protected].

Dravet Syndrome Foundation (DSF) is a designated 501(c)3 charitable organization. Our EIN is 27-0924627.


Dravet Syndrome Foundation was founded by a group of parents with the purpose of expediting research to find a cure and better treatments for their afflicted children. It was established in the state of Connecticut and was designated a tax-exempt public charity in the United States in October 2009 by the Internal Revenue Service under Section 501(c)(3).

Letter of Determination for 501(c)(3)


DSF realizes the significance of financial transparency to our supporters. We pride ourselves on maintaining operating expenses at a minimum to ensure that the generous gift of every donor truly brings us one step closer towards a cure. DSF is registered as a tax-exempt public charity by the Internal Revenue Service under Section 501(c)(3).

DSF’s tax identification number is 27-0924627.


In addition to our internal financial management controls to assure ethical leadership, DSF has established donation policy for pharmaceutical companies, sponsors and private donors. These guidelines serve as guidance for our board members, staff and volunteers to guarantee there is no real or perceived bias.

DSF Donation & Sponsorship Guidelines


In all relations with external organizations, DSF will act in ways that enhance our credibility and professional recognition. In order to ensure that all corporate donations are in alignment with our mission and are for the benefit of the Dravet community, DSF follows the following guidelines and principles.

DSF Corporate Relations Guidelines

Tax Filings and Financial Statements