Resources

26 Jan

Posted at 16:22h in Resources

Simons Searchlight is a research registry for gene and Copy Number Variants that works with families and researchers around the world to help speed up research on rare genetic neurodevelopmental disorders.By collecting detailed information and blood samples, Simons Searchlight takes a deep dive into these disorders....

26 Jan

Posted at 16:21h in Resources

If you are newly diagnosed, RareConnect is a patient-led platform that can help you find a community specific to your disease. Through this resource, you can share symptoms, stories, and treatment experiences with others. If you can’t find your disease community on their platform, you...