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 […]
What to watch for from DSF in 2023 Read More »
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
Use Your Connections to Help DSF! Read More »
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
Join us in welcoming our new staff members! Read More »
The Rare Disease Diversity Coalition is dedicated to addressing the extraordinary challenges faced by historically underrepresented rare disease patients as encompassed by social determinants of health (SDOH). The Coalition brings together rare disease experts, patients, health care professionals, diversity advocates, and industry leaders to bring about evidence-based solutions that alleviate the disproportionate burden of rare
Rare Disease Diversity Coalition Read More »
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.
Rare Epilepsy Network Partner Read More »
Rare & Ready: A Genetic Condition Coalition believes policies must make sure that patients with rare or genetic conditions can get the care they need. These patients deserve access to new FDA-approved therapies as soon as they are available. We need to mitigate state Medicaid program hurdles that limit access.
The mission of Parent to Parent is to support a national network of Parent to Parent programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs.
Parent to Parent – Alliance Member Read More »
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 »
In 1973 as a result of the need for profound changes in mental health services, the Alliance was incorporated in Los Angeles as the Coalition of Spanish-Speaking Mental Health Organizations (COSSMHO). Since then the organization has grown and expanded to reflect the changing needs of the people and communities served. Today, the National Alliance for
National Alliance for Hispanic Health Read More »
Meredith has been an active part of the Dravet community since her daughter, Eden, was diagnosed with Dravet syndrome in 2016. The DSF has directly impacted her life by advocating for approval of medications that were removed from the marketplace and connecting her with other families who are fighting Dravet syndrome. Because of these efforts,
Meredith Bankston – Event Coordinator Read More »
