If you or a loved one has a rare eye disease, keep this in mind: Even though the condition may be uncommon, you’re not alone. Hundreds of thousands of people in the United States are living with some type of rare eye disease right now.
And while most doctors may not know a lot about your condition, there are experts and organizations that do. They’re dedicated to helping people with all types of rare diseases — and their families too. Learn what they have to offer.
Find out more about your condition
- Visit the Rare Diseases Clinical Research Network website to get information about many uncommon conditions.
- Get in touch with the Genetic and Rare Diseases Information Center (GARD) to connect with helpful resources and specialists who can talk to you about your condition.
- Check out Genetics Home Reference to see fact sheets about more than 1,200 diseases and conditions.
- Get tips from GARD on how to find a specialist who’s an expert in treating your condition.
- Search the National Organization for Rare Disorders (NORD) database to find patient organizations that can help people with rare diseases.
Look into clinical trials and research programs
- Learn more about clinical trials. Clinical trials may offer a way to get a new treatment for a rare eye disease. But before joining a clinical trial or study, it’s important to talk to your doctor about whether the study is right for you.
- Check out the ResearchMatch online tool to sign up to get emails about clinical trials that may be a good fit for you.
- Join the All of Us Research Program to see how you can help researchers discover new, individualized treatments for rare diseases.
NEI has information on a number of rare eye diseases, including: