As of 4Q2023, the census stands at 1,339 patients, an increase of 42 from the previous quarter. See this link for full details on the latest census.
What does this number mean?
This is the total number of people diagnosed with SYNGAP1 known to SYNGAP1 patient advocacy organizations and family support groups worldwide.
Why is it imperative that we count SYNGAP1 patients?
It is crucial to identify all those with SYNGAP1 so we can reach out and recruit more people into natural history studies such as SRF’s major collaboration with Ciitizen.
How can SRF help newly diagnosed SYNGAP1 families?
We have developed a SYNGAP1 Resources for Newly Diagnosed Families that prioritizes and organizes information for newly diagnosed families.
How can SYNGAP1 families help?
- Connect with SRF or any of our partners in SGN
- Participate in SRF’s registries with Ciitizen, Simons Searchlight, and Rare-X
- Sign up for all studies possible
- Fundraise – research isn’t cheap!
- Volunteer – help us find a cure!
THESE NUMBERS ARE STILL TOO LOW
Every new diagnosis proves that there are still more patients out there. SRF and SGN are determined to find them all. One of the most powerful things you can do as parents, caregivers, and siblings is to share stories. Contact Ed@curesyngap1.org for more information.