If your loved one has been diagnosed with Snyder-Robinson Syndrome, you are not alone. There are resources to help you navigate doctors visits, information to help you better understand the disorder, and support services to connect you with other families going through the same thing.
When someone you love is diagnosed with a disease as rare as Snyder-Robinson Syndrome, it can feel like no one else understands what you’re going through. Despite being small in numbers, we have an incredibly powerful network of SRS families and loved ones who are here to offer support, advice, and resources to ensure that you are not alone on this journey.
The Snyder-Robinson Foundation has compiled this list of resources to help you identify possible options to meet your needs. The resources listed below are not endorsed by SRF & SRF is not responsible for the content of or service provided by any of these resources.
If your country is not listed or if there is an organization you would like added to the list, please contact us.
NORD Patient and Caregiver Resource Center
Genetic and Rare Diseases Information Center – Patients, Families & Friends
Center for Parent Information & Resources – Rare Disorders
Children’s National – Resources for Families
United Kingdom (UK)
Learn more about Snyder-Robinson Syndrome through information on our website, research literature, and videos created by researchers and clinicians.