Not only do I work with this organization, but I am also a mother to a 3-year-old daughter who was diagnosed with this genetic mutation and had her first seizure at only 2 months old. It took our family about 3 months of constant ER visits, admissions, and testing before we were able to identify […]
Dravet Awareness Day Proclamation – Orlando, Florida Read More »
Right click to save any of the images below for use in promoting this year’s Give Up Your Cup!
2025 Give Up Your Cup Social Media Images Read More »
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
Programs for our Patient Community Read More »
The Seizure Action Plan Coalition began in 2020 as a labor of love between the LGS Foundation, Dravet Syndrome Foundation, and TSC Alliance. The organizations knew there was an opportunity to bring the epilepsy community together to bring attention and awareness to Seizure Action Plans for people with epilepsy. The three organizations served as the Governing Organizations of the coalition
Seizure Action Plan Coalition 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 »
NeurologyLive®, is a multimedia platform dedicated to providing health care professionals with direct access to expert-driven, practice-changing news and insights in neurology. DSF is a member of their Strategic Alliance Partnership (SAP) program. The SAP program builds a community of advocacy groups, medical associations, and medical institutions to foster collaboration and an open exchange of
NeurologyLive Partner – Strategic Alliance Partnership 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 »
