We are pleased to announce that the 2024 DSF Biennial Family & Professional Conference will be held next year in Minneapolis, Minnesota, on June 20-22. The conference and associated activities will be held at the JW Marriott hotel, which is connected to the Mall of America. Our 6th biennial conference will bring patient families, clinicians, …
Medical expenses are high when you have a loved one with Dravet syndrome, and we know everyone in our community needs help at one time or another. By providing financial assistance for necessary medical equipment, the DSF Patient Assistance Grant (PAG) Program provides a valuable resource to patients, helping them offer the best quality of care …
The 2023 DSF Patient Assistance Grant Program is now open! Read More »
Right click to save any of the images below for use in promoting this year’s Give Up Your Cup!
The heart of DSF is our patient community. We exist to push research forward in the field of Dravet syndrome and to offer support and advocacy for our patient families. To assure that our community never feels alone on this medical journey, we offer several free programs to connect and support our patient families. Click …
Three simple words make up DSF’s new tagline: Community. Research. Progress. We believe our new tagline is an external expression of our purpose and all that DSF has accomplished. Because rare diseases, such as Dravet syndrome, affect a small number of people relative to diseases such as cancer or diabetes, they are often considered lower …
Annually, the DSF Board of Directors, with input from the staff, decides on priorities and objectives for the year ahead. These strategies are designed with the needs of DSF and the Dravet syndrome community in mind. We feel that 2023 will be a pivotal year for DSF in our growth and development and I am …
Do you own a business or work for a national company that would benefit from national attention, while supporting the Dravet syndrome community? Corporate donations to nonprofit organizations such as DSF provide companies with a way to give back to the community, engage their employees, and improve brand perception. There are many ways that a …
DSF started as a small, volunteer-led group in 2009 and has grown into a professional organization that serves patient families, healthcare professionals, researchers, industry partners, and other stakeholders in the Dravet syndrome community. In addition to offering resources, education, and support to patient families, we are the largest non-governmental funder of Dravet syndrome-specific research and …
The mission of Rare Epilepsy Network (REN) is to work with urgency to collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy.
As a CSSSE Advisory Group member, DSF will make key contributions to the project, including: Review of Needs Assessment results (Navigator and participating school nurses) – provide recommendations on PD, tools, and resources to address identified nursing practice gaps Identify key resources to populate a NASN web page dedicated to a whole child/student-centered approach to …
NASN – Coordinated Support System for Students with Epilepsy (CSSSE) Advisory Group Read More »
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