Ion channel foundations, associations, and other nonprofits

Discover nonprofit organizations raising awareness of ion channel-related disorders, supporting and funding research, and helping affected individuals and families.

Company NameInfoCountry
Ajude o Rafa - Epilepsia SCN8AThe Brazilian SCN8A Epilepsy Research and Awareness FoundationBrazil
Alliance Syndrome de DravetL’Alliance Syndrome de Dravet is an association of French-speaking parents of children with Dravet Syndrome. The mission of L’Alliance Syndrome de Dravet is to support the families, increase awareness as well as to support medical research.France
CACNA1A FoundationThe mission of the CACNA1A Foundation is to raise awareness of the CACNA1A genetic variants as well as to support research and treatment options in order to make a difference in the lives of those affected by CACNA1A.USA
Channeling Hope FoundationThe Channeling Hope Foundation was established in 2023 to work together to advance care and develop treatments for children affected by NALCN genetic disorders.USA
Clayton's CrusadeClayton’s Crusade is a nonprofit organization that focuses on raising funds for and spreading awareness of SCN8A.USA
Cure CLCN4Cure CLCN4 supports research aimed at accelerating the understanding of CLCN4 biology, to allow identification of effective new treatments.UK
Cystic Fibrosis FoundationThe mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.USA
Dravet Syndrome FoundationThe mission of Dravet Syndrome Foundation is to raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.USA
FamilieSCN2A FoundationFamilieSCN2A Foundation has been created with the goal to improve the lives of those affected by SCN2A related disorders through research, public awareness, family support and patient advocacy.USA
Genetic Epilepsy Team Australia (GETA)Genetic Epilepsy Team Australia (GETA) is a group of parents whose children have rare genetic epilepsy. GETA's goal is to support the ground-breaking research that happens right here in Australia – from stem cells to mouse models to biotech and beyond.Australia
KCNMA1 Channelopathy International Advocacy Foundation (KCIAF)The goal of KCIAF is to educate patients, families, the public and the scientific community about KCNMA1-associated conditions and to promote efforts to find effective treatments for the wide range of symptoms which can be caused by KCNMA1 mutations.USA
KCNQ2 Cure AllianceKCNQ2 Cure Alliance has been created with the mission to educate and to advance research leading to treatments or a cure for patients living with the genetic disorder KCNQ2 epileptic encephalopathy.USA
KCNQ2 e.v. associationKCNQ2 e.v. association has been founded to make information about KCNQ2 available to the public, to support research in this area and to help those diagnosed with KCNQ2 encephalopathy.Germany
KCNT1 Epilepsy FoundationThe KCNT1 Epilepsy Foundation aims to provide accurate information for parents and physicians about KCNT1 Epilepsy disease mechanisms, symptoms and treatment options. USA
Libellas International FoundationLibellas International Foundation is a nonprofit patient advocacy organization dedicated to improving the lives of children affected by NALCN ion channel-related diseases, through research, family support programs and education.Spain
SCN2A AustraliaSCN2A Australia is a group of parents whose children have SCN2A mutation. They work towards a cure for SCN2A, raising awareness and helping those working on or affected by SCN2A better understand this condition and live better lives. Australia
SCN2A EuropeSCN2A Europe would like to support the national communities and become an entry point for families, clinicians and researchers seeking information about SCN2A. Germany
SCN8a FranceThe Scn8a France association exists to support families affected by SCN8A-related disease, to contribute to progress in research, and to promote better care for Scn8a patients.France
SCN8A ItaliaA group of parents and families with children affected by the SCN8A genetic mutation.Italy
SCN8A UK & IrelandSCN8A UK & Ireland was set up by a group of parents affected by SCN8A with the aims of promoting research, fund raising and providing help and support for families with children and adults who have SCN8A. UK
The Cute Syndrome FoundationThe Cute Syndrome Foundation raises awareness of SCN8A mutations, funds the dedicated and talented scientists researching SCN8A, and supports the families around the world who are affected by this disorder.USA
The Jack Pribaz KCNQ2 FoundationThe Jack Pribaz Foundation exists to help fund research on KCNQ2 gene and ultimately to assist the medical world in understanding the underlying causes of epilepsy. USA
Timothy Syndrome Alliance (TSA)The mission ot the Timothy Syndrome Alliance is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders, including Timothy Syndrome and LongQT8, and to support the families and carers of those diagnosed.UK
Wishes for ElliottWishes for Elliott is a family-based, non-profit organization dedicated to supporting research to improve the lives and prognosis of children struggling with SCN8A mutations.USA