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 …
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.
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.
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 »
Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. They envision a globally connected community equipped to eliminate the challenges of rare disease.
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
By connecting epilepsy centers with each other and with community service providers, and including people with epilepsy and their families, the Epilepsy Learning Healthcare System (ELHS) will empower all people with epilepsy to live their highest quality of life, striving for freedom from seizures and side effects. DSF is proud to be a community partner …
The Epilepsy Leadership Council (ELC) is made up of individuals representing organizations serving individuals with epilepsy and their families, as well as professionals, and governmental organizations. The mission is to develop and coordinate among its members shared projects that will have a positive impact on the lives of individuals with epilepsy, focusing on those areas …
Epilepsy Alliance America, founded in 2018, is a growing national organization representing like-minded local, regional, statewide, and even other national agencies dedicated to serving the everyday needs of people who live with seizures and epilepsy every day. DSF is proud to be a nonprofit partner.
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