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 »
After spending the last 20 years in the insurance industry, Karen signed on in early 2023 as an Administrative Assistant for DSF. Karen has been a volunteer Parent Ambassador for the West Region of the DSF Family Network since 2015 and helped to bring the Day of Dravet events to San Francisco, Seattle, and Los
Karen Masters Foster – Family & Caregiver Engagement 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 »
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 Leadership Council Member Read More »
