What is REACH SYNGAP1?
CURE SYNGAP1 has organized a community-driven, precompetitive consortium that places the lived experience of people with SYNGAP1-Related Disorders and their caregivers at the center of evidence generation, advocacy and decision-making. Much of the true impact of SRD on daily life, independence, families, caregiving, and economic burden is not fully captured by traditional clinical measures. The program will work with the community to identify what matters most, generate credible evidence to make those experiences visible, and turn patient and caregiver experience into actionable evidence.
Together with industry and other stakeholders, the consortium will use this evidence to strengthen the patient and caregiver voice with regulators, payers, and policymakers; empower families to participate effectively in those conversations; and prepare the ecosystem for regulatory review, approval, coverage, reimbursement, and access to effective therapies as they become available. As the therapeutic landscape evolves, the program will evolve with it while remaining guided by the priorities and experiences of the SYNGAP1 community.
Learn More
To learn more about this program, including the five (5) workstreams (Regulatory, Evidence, Access, Community Empowerment, and Health Policy), proposed activities, and the opportunity for industry support in this document. All inquiries and questions can be directed to CURE SYNGAP1’s COO, Virginie McNamar at virginie@cureSYNGAP1.org.