The Australian syngap community is small but rapidly growing. In the last 2 years we have grown to 17 syngap families. It has been estimated that 1-2% of all Intellectual Disability diagnoses are part of the Syngap family. Based on that, experts predict there are currently 5,500 undiagnosed Syngap patients in Australia.
We’re focused on raising public awareness of Syngap, connecting the Syngap community, fundraising for research, connecting syngap researchers globally to ensure they are well positioned to find a cure.
We have an Australian syngap messenger group, please contact Danielle Williams through Facebook messenger to join this group.
To hear about the latest Syngap research, LIKE the Australian SynGAP research facebook page https://m.facebook.com/Syngapresearch/
As parents, we have a lot in common. We have all experienced that feeling of helplessness, the stress of being faced with multiple differential diagnoses, the relief of receiving an answer to the search (syngap diagnosis) and now connecting with other parents who just ‘get it’. Welcome to the syngap family, we look forward to sharing experiences, hopes and ultimately a cure with you.
If you can’t wait to connect, please contact Danielle Williams (Melbourne based mum to 2 syngap girls) on email@example.com