We have partnered with Simons VIP Connect for a patient registry. The Simons Variation in Individuals Project – Simons VIP – is an online community that supports families with rare genetic changes (also called “genomic variants”) associated with features of autism and developmental delay. We provide access to resources, information, and family support. Simons VIP also provides an opportunity for families to participate in research. Participants receive Amazon gift cards for time spent contributing to research.
Register Here as a Community Member & Research Participant.
If you would like to be included in our patient community directory, please contact Amber Freed at afreed@SLC6A1Connect.org.
Additional Registries and Support Organizations
Unique is a non-profit dedicated to understanding rare chromosome and gene disorder. You will have access to a secret Facebook support group once you join. Click Here
The Rare Epilepsy Network (REN) is a collaboration between the Epilepsy Foundation, RTI International, Columbia University and many different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures. Click Here