We have partnered with Simons Searchlight for a patient registry.  Simons Searchlight 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 Searchlight 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

Additional Community Resources

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

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.

%d bloggers like this: