Mill Valley, CA – May 31, 2026 – A coalition of leading international patient-led organizations today announced the formal establishment of the CURE SYNGAP1 COLLECTIVE (CSC) . This collaborative framework unites independent SYNGAP1 charities from around the world under a shared mission to accelerate the availability of safe, effective, and disease-modifying treatments for all individuals living with SYNGAP1-Related Disorders (SRD).
The CSC is built on a foundation of urgency and action, focusing its global efforts on three primary pillars:
While the CSC provides a unified front for global research and industry engagement, the Memorandum of Understanding (MOU) explicitly preserves the autonomy of its members. Each participating organization remains a separate and independent legal entity with its own local governance from their given geography. Every member charity continues to fundraise independently within its own region and retains full authority over the utilization of its local funding.
“The CURE SYNGAP1 COLLECTIVE is for those who share a sense of urgency and a commitment to action,” said a representative. “We move fast, work together, and stay focused on solutions for our families”.
All Member Charities are also proud participants in the Syngap Global Network and support its mission of fostering global collaboration and community engagement.
The Collective currently includes member organizations representing the United States, United Kingdom, Australia, Netherlands, Colombia, Argentina, Poland, Spain, India, and Portugal .
SYNGAP1-Related Disorders ( ICD-10 F78.A1 ) are a rare genetic disorder caused by variants on the SYNGAP1 gene that reduce SYNGAP1 protein levels. Over 1,761 SRD patients have been identified globally to date, and the number grows weekly. This protein acts as a regulator in the synapses (where neurons communicate with each other). When SYNGAP1 protein levels are too low, we see an increase in excitability in the synapses making it difficult for neurons to communicate effectively. This leads to many neurological issues seen in SRD patients.
Symptoms of SRD include primarily neurological issues including autism spectrum disorder (ASD), global developmental delay leading to intellectual disability, epilepsy, hypotonia (low muscle tone), gross and fine motor delays, and visual abnormalities such as strabismus (crossed eyes) as well as disordered sleep and gastrointestinal challenges.
Founded in the US in 2018 as a 501(c)(3) public charity, CURE SYNGAP1 is dedicated to accelerating the availability of safe, effective, disease-modifying treatments for everyone living with SYNGAP1-Related Disorders (SRD). By working closely with patients, clinicians, researchers, and regulatory authorities, we ensure clinical programs are scientifically rigorous and responsive to our community’s lived experience.
Completely family-led, CURE SYNGAP1 is a leading funder of SYNGAP1 research having committed over $8 million in research grants to drive progress toward a cure. You can learn more about CURE SYNGAP1 and their accomplishments by reading their most recent Impact Report .
For more on CURE SYNGAP1, visit cureSYNGAP1.org ; subscribe to the CURE SYNGAP1 Podcast , SYNGAP1 Stories , and Café SYNGAP1 ; and follow @cureSYNGAP1 on LinkedIn , YouTube , Instagram , Facebook , TikTok , or X .
CURE SYNGAP1 is a member of FasterCures , COMBINEDBrain , Global Genes Foundation Alliance , Everylife Foundation Community Congress , Epilepsies Action Network , Personalized Medicine Coalition , Rare Epilepsy Network , Epilepsy Leadership Council , Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism (AGENDA), California Action Link for Rare Diseases , American Brain Coalition , Genetic Alliance UK , Rare Disease UK , Syndromes Without a Name (SWAN UK), Jumpstart Program , Patient Worthy , Autism Brain Net , Innovation and Value Initiative , Rare Disease Diversity Coalition , Cambridge Rare Disease Network , Breaking Down Barriers , Rare-X , Mencap , IndoUSRare , The World Orphan Drug Congress , and Research America .