First and foremost, it is vital to join our two patient registries with Simons Searchlight and Ciitizen.com. Click here for more information: SLC6A1 Patient Registry. A patient registry is the primary method to connect patients with researchers and to alert patients of new treatments.
Contact Amber Freed at afreed@SLC6A1Connect.org to be included in the private patient directory. You will receive important advocacy information.
Familiarize yourself with various research and support groups to find community and to raise awareness on our disease. Click Here
Each state offers different programs to support people with special needs and their families. If you need help finding resources in your state, we recommend that you contact your local chapter of Family Voices. They are dedicated to helping special needs families navigate the healthcare system to gain access to the best services. Familyvoices.org
Not all states offer the same level of support. It is important to understand how your state compares. Where you raise your child and the support systems you build around them really matters. Here is NORD’s ranking of US states by level of support. Rarediseases.org/nord-state-report-card