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 »
Mason’s Movement Foundation is a 501(c)3 non-profit, established in 2020 by Matt and Amanda Langford in loving memory of their son, Mason Langford. Their foundation supports families locally, nationally, and internationally through research funding, grief support to families, and aid to those in need. They live to let Mason shine, and his legacy lives on through
Mason’s Movement Foundation 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.
Global Genes – Global Advocacy Alliance Partner Read More »
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.
EveryLife Foundation Read More »
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
Epilepsy Learning Healthcare System Read More »
