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Rare Diseases
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<span>Rare Diseases</span>
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<div class="c-text">
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<p>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.</p>
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<p>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.</p>
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Find out more about your condition
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<ul><li><a href="https://www.rarediseasesnetwork.org/">Visit the Rare Diseases Clinical Research Network website</a> to get information about many uncommon conditions.</li><li><a href="https://rarediseases.info.nih.gov/">Get in touch with the Genetic and Rare Diseases Information Center (GARD)</a> to connect with helpful resources and specialists who can talk to you about your condition.</li><li><a href="https://ghr.nlm.nih.gov/">Check out Genetics Home Reference</a> to see fact sheets about more than 1,200 diseases and conditions.</li></ul>
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Get help
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<ul><li><a href="https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist">Get tips from GARD</a> on how to find a specialist who’s an expert in treating your condition.</li><li><a href="https://rarediseases.org/for-patients-and-families/connect-others/find-patient-organization/">Search the National Organization for Rare Disorders (NORD) database</a> to find patient organizations that can help people with rare diseases.</li></ul>
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Look into clinical trials and research programs
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<ul><li><a href="/research/clinical-trials">Learn more about clinical trials</a>. Clinical trials may offer a way to get a new treatment for a rare eye disease. But before<strong> </strong>joining a clinical trial or study, it’s important to talk to your doctor about whether the study is right for you.</li><li><a href="https://www.researchmatch.org/">Check out the ResearchMatch online tool</a> to sign up to get emails about clinical trials that may be a good fit for you.</li><li><a href="https://allofus.nih.gov/">Join the All of Us Research Program</a> to see how you can help researchers discover new, individualized treatments for rare diseases.</li></ul>
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<p>NEI has information on a number of rare eye diseases, including:</p><ul><li><a href="/learn-about-eye-health/eye-conditions-and-diseases/anophthalmia-and-microphthalmia">Anophthalmia and Microphthalmia</a></li><li><a href="/learn-about-eye-health/eye-conditions-and-diseases/biettis-crystalline-dystrophy">Bietti’s Crystalline Dystrophy</a></li><li><a href="/learn-about-eye-health/eye-conditions-and-diseases/behcets-disease">Behçet’s Disease</a></li><li><a href="/learn-about-eye-health/eye-conditions-and-diseases/coloboma">Coloboma</a></li><li><a href="/learn-about-eye-health/eye-conditions-and-diseases/graves-eye-disease">Graves' Eye Disease</a></li><li><a href="/learn-about-eye-health/eye-conditions-and-diseases/idiopathic-intracranial-hypertension">Idiopathic Intracranial Hypertension</a></li><li><a href="/learn-about-eye-health/eye-conditions-and-diseases/retinitis-pigmentosa">Retinitis Pigmentosa</a></li><li><a href="/learn-about-eye-health/eye-conditions-and-diseases/retinoblastoma">Retinoblastoma</a></li><li><a href="/learn-about-eye-health/eye-conditions-and-diseases/stargardt-disease">Stargardt Disease</a></li><li><a href="/learn-about-eye-health/eye-conditions-and-diseases/usher-syndrome">Usher Syndrome</a></li></ul>
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<p class="views-element-container c-last-updated" id="block-views-block-nei-last-updated-block-1"><strong>Last updated:</strong> December 4, 2024</p>
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<a href="/about/news-and-events/news/scientists-discover-gene-responsible-rare-inherited-eye-disease" hreflang="en">Scientists discover gene responsible for rare, inherited eye disease</a>
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<a href="/about/news-and-events/news/u-minnesota-researchers-discover-potential-new-pathway-prevent-age-related-macular-degeneration" hreflang="en">U. Minnesota researchers discover potential new pathway to prevent age-related macular degeneration</a>
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