Patient Registry

Our Official Registry will be Announced Soon.

In the meantime, please consider registering with the following institutions for research purposes and to find community:

Unique is a non-profit dedicated to understanding rare chromosome and gene disorder.  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

Genome Connect is an online registry designed by the Clinical Genome Resource (ClinGen) for people who are interested in sharing de-identified genetic and health information to improve understanding of genetics and health. Click Here.