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Home - Genetic and Rare Diseases Information Center
https://rarediseases.info.nih.gov/
WebFind or understand information about a rare disease. Navigate information throughout the diagnostic journey. Discover resources, disease experts, or clinical studies for a rare disease.
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Diseases - Genetic and Rare Diseases Information Center
https://rarediseases.info.nih.gov/diseases/
WebExplore GARD's list of rare diseases. Filter by category or search by disease name, acronym, or synonym. Rare diseases found on GARD should not be used as policy statements of NCATS or the NIH.
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About - Genetic and Rare Diseases Information Center
https://rarediseases.info.nih.gov/about/
WebLearn about the Genetic and Rare Diseases Information Center, the GARD website and its policies, and how to access data used on the GARD website. Registration for this year's Rare Disease Day at NIH is now open!
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Contact Us - Genetic and Rare Diseases Information Center
https://rarediseases.info.nih.gov/contact/
WebUse the phone number or other contact options to ask a rare disease information specialist a question or provide feedback to the Genetic and Rare Diseases Information Center.
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Communicating About Rare Diseases - National Institutes of Health (NIH)
https://www.nih.gov/about-nih/what-we-do/science-health-public-trust/perspectives/communicating-about-rare-diseases
WebFeb 28, 2024 · NIH is taking a similar approach for rare diseases—that is, individually they are rare, but collectively they are common. By studying what is common across rare diseases, we can maximize research approaches for more than one disease at a time. So how can you help?
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Genetic and Rare Diseases Information Center - National Human …
https://www.genome.gov/For-Patients-and-Families/Genetic-and-Rare-Diseases-Information-Center
WebMay 18, 2018 · Overview. The Genetic and Rare Diseases Information Center (GARD) was created in 2002 by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases Research (ORDR) - two agencies at the National Institutes of Health (NIH). GARD provides immediate, virtually round-the-clock access to experienced …
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Rare Diseases | National Institutes of Health (NIH)
https://www.nih.gov/about-nih/what-we-do/nih-turning-discovery-into-health/promise-precision-medicine/rare-diseases
WebNov 16, 2023 · This page last reviewed on November 16, 2023. Rare diseases were once considered medical curiosities with little public-health impact. But though such diseases are individually rare, collectively an estimated 25 to 30 million Americans are affected.
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Genetic and Rare Diseases (GARD) Information Center
https://ncats.nih.gov/research/research-resources/gard
Web6 days ago · We oversee this NIH-wide grant program that supports medical research on over 200 rare diseases through clinical studies, including collaborations, study enrollment and data sharing. Last updated on April 19, 2024. GARD offers free access to reliable information for individuals and families affected by rare diseases.
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National Organization for Rare Disorders (NORD) | NIDCD
https://www.nidcd.nih.gov/directory/national-organization-rare-disorders-nord
WebJune 23, 2020. The National Organization for Rare Disorders (NORD) is a nonprofit voluntary health agency that serves as a clearinghouse for information on rare disorders. A rare disorder is a disease or condition that affects fewer than 200,000 Americans.
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NIH study suggests people with rare diseases face significantly higher
https://www.nih.gov/news-events/news-releases/nih-study-suggests-people-rare-diseases-face-significantly-higher-health-care-costs
WebFriday, October 22, 2021. NIH study suggests people with rare diseases face significantly higher health care costs. A new, retrospective study of medical and insurance records indicates health care costs for people with a rare disease have been underestimated and are three to five times greater than the costs for people without a rare disease.
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