image: The CURE SYNGAP1 Collective brings together independent SYNGAP1 patient-led organizations across 10 geographic areas, representing the United States, United Kingdom, Australia, Netherlands, Colombia, Argentina, Poland, Spain, India, and Portugal. The Collective will coordinate global action to accelerate research, clinical trial readiness, and access to future treatments for SYNGAP1-Related Disorders.
Credit: CURE SYNGAP1
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:
- Funding Science: Driving and funding research that closes key gaps in understanding and advances the development of new therapies.
- Collaborating with Industry, Regulators, and Scientists: Working directly with pharmaceutical partners, biotech companies, and regulatory bodies to accelerate clinical trial readiness and execution. A key focus of this collaboration is ensuring global patient access to future treatments, bridging the gap between clinical development and real-world availability.
- Educating Families: Empowering and activating the global patient community to successfully participate in and support clinical trials.
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.
Leaders across the Collective shared:
- United States (CURE SYNGAP1): SYNGAP1 is a global disease that requires a global solution; it does not stop at borders, and neither can our work. Clinical trials are global by nature, and whether we are defining disease burden or selecting endpoints, our message must be unified. By coordinating our research funding and strategies through the CURE SYNGAP1 Collective, we strip away barriers and make it easier for industry and researchers to engage with organizations and our community. When they work with the Collective, they are meeting a synchronized global front where communication flows and we are all moving together, faster, toward a cure.”
– Virginie McNamar, President, CURE SYNGAP1 - United Kingdom (SYNGAP1 UK): “‘As a rare disease patient group in the UK, we realise the power of joining a larger collective to all work together to improve the outcomes of our loved ones affected by Syngap1. Working together we can achieve so much more than we could in isolation. We look forward to combining resources to help all families around the globe.”
– Julie Pender, SYNGAP1 UK - Australia (SRF Australia): “SYNGAP1 is a global condition that requires a coordinated global response. We are excited to join the CURE SYNGAP1 COLLECTIVE — a group united by urgency and a shared commitment to accelerating treatments and ensuring access to them. While global collaboration across our community is well established through initiatives such as the Syngap Global Network, the Collective has been intentionally formed to complement these efforts — as a more formal, execution-focused collaboration designed to accelerate therapeutic development, clinical trial readiness, and patient access. By aligning globally in this way, we can move faster and more effectively toward treatments for families.”
– Danielle Williams, President, SYNGAP Research Fund Australia - Europe (SRF Europe): “Across Europe and around the world, families share the same urgency—we cannot afford to wait. The CURE SYNGAP1 COLLECTIVE brings us together in a more coordinated, action-driven way, allowing us to move faster, share knowledge, and accelerate progress toward treatments. By working as one global community, we can shorten timelines and ensure that meaningful therapies reach our children as quickly as possible—because for our families, this is about tomorrow, not a distant future.”
– Katrien Deckers, Stichting SYNGAP Research Fund Europe - Latin America (CURE SYNGAP1 LatAm): “Latin America represents a growing community of families, clinicians, and advocates committed to accelerating solutions for SYNGAP1. By joining the CURE SYNGAP1 Collective, we strengthen our ability to collaborate globally while ensuring that the realities of families in our region are part of the conversation as therapies advance toward clinical trials and real-world access.”
– Vicky Arteaga. CureSyngap1 LatAm - Argentina (Fundación SYNGAP1): “[“For families living with SYNGAP1-related disorders in Argentina, urgency is part of our daily lives. Joining the CURE SYNGAP1 Collective allows us to stand alongside organizations around the world to accelerate research, prepare our communities for clinical trials, and ensure that families in our region are part of the future of SYNGAP1 treatments.”
– Valeria Torcetta, President, Fundación SYNGAP1 Argentina - Poland (Razem dla SYNGAP1): “We are incredibly excited to join the CURE SYNGAP1 Collective and to strengthen collaboration across the global SYNGAP1 community. For families affected by SYNGAP1-related disorders, international cooperation is essential to accelerate research, prepare for clinical trials, and move effective therapies forward. By working together with partners around the world, we can amplify the voices of patients and families and help bring meaningful treatments closer to reality.”
Monika Nestorowicz, Association Razem dla SYNGAP1 - Spain (SYNGAP1 España): “At Syngap1 Spain, we firmly believe in the need to work together with all the countries that are part of the CURE SYNGAP1 Collective. Since the creation of our association in 2019, we have grown from just 4 families to the 62 we have today, and we have always been very clear that our objective is ‘act locally, think globally‘. We focus on raising awareness of the disease in Spain and supporting our families and research teams in Barcelona, but also on being part of a powerful international structure that unites efforts and seeks the common goal of all: a cure for Syngap1.
– Gonzalo Bermejo, SYNGAP1 España - India (SYNGAP1 India): “Cure Syngap1 (formerly, SRF) has always been a guiding force for the entire Syngap1 community pushing for a solution for anyone and everyone affected with this mutation. Syngap1 India is excited to formally join the Cure Syngap1 Collective for a larger voice, awareness and ability to reach the goals sooner.
– Amit Mandora, CURE SYNGAP1 India - Portugal (CURE SYNGAP1 Portugal): ““Learning that my son had SYNGAP1 during COVID turned our world upside down. Meeting Mike and his team shortly after was a true blessing—they brought us hope when we needed it most. Being part of Cure SYNGAP1 is deeply personal for me. I’m proud to stand alongside this community and fight every day to give families like mine a future with a cure.”
– Henrique Simões de Almeida, CURE SYNGAP1, Portugal
About SYNGAP1-Related Disorders (SRD)
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.
About CURE SYNGAP1
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.