SLC6A1 hosts a formal registry through Simons Searchlight. Simons Searchlight is a research initiative, supporting families with rare genetic changes (also called “genomic variants”) associated with features of autism and developmental delay. SLC6A1 is one of many genes they are studying and a way to connect families with experts. You will be asked to fill out several online surveys and complete several phone calls to collect data on your child and family. All your information is kept private and will go a long way towards assisting researchers who are trying to understand how SLC6A1 affects our children. It is ESSENTIAL for every family to register in order to be considered and alerted to upcoming treatment options. You will receive Amazon gift cards as a courtesy for your time. For more information on how to register your family, please visit Simons Searchlight.
SLC6A1 Connect is excited to partner with AllStripes to enable new SLC6A1 research! AllStripes is a platform that makes it easy for rare disease patients and caregivers to contribute to drug development research from home at no cost.
More FAQ’s? The National Institute of Health provides an informational overview.
If you would like to be included in our patient community directory to receive updates and newsletters, 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