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Help build a better future for rare-disease families. ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏
Greetings from Rare Genomics Institute!
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Dear friends and supporters, Today is Rare Disease Day, a day that is incredibly special to us. We are filled with gratitude for everything we have achieved and for what is on the horizon. We invite you to make a donation to support our great cause. Your generosity helps provide critical resources, advocacy, and support to families facing the challenges of rare disease. Together, we can bring meaningful change and build an even brighter future.
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Sun, Feb 15
More than 7,000 rare diseases affect an estimated 1 in 10 Americans, yet public awareness remains limited. Rare Disease Day, established in 2008 by EURORDIS, unites over 100 countries each year to
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Put Your Rare Disease Knowledge to the TestFeeling curious? Try our short quiz to test your knowledge of rare diseases — share it with friends to see how they do and help raise awareness.
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1. How many rare diseases are currently estimated to exist worldwide? a. Approximately 1,000-2,000 diseases b. Approximately 3,000-4,000 diseases c. Approximately 6,000-8,000 diseases d. Approximately 10,000-12,000 diseases
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2. What is the average diagnostic delay for patients with rare diseases? a. 1-2 years b. 3-4 years c. 6-8 years d. 10-12 years
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3. According to the European Union definition, a disease is considered rare if it affects fewer than: a. 1 in 500 people b. 1 in 2,000 people c. 1 in 5,000 people d. 1 in 10,000 people
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Scroll to the end to see the answers. Want to learn more about rare diseases? Click here for more facts about rare diseases!
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What’s New: The Latest News & BlogsHere are our newest stories and updates — each one shows real impact, and your clicks help spread the word.
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Feb 12, 2026 Drug Repurposing: Finding New Uses for Old Medicines in Rare DiseasesFor millions living with rare diseases, the biggest challenge isn’t diagnosis — it’s finding effective treatment. Developing a new drug can take over a decade and cost billions, often making it impractical for small patient populations. Drug repurposing offers a faster, lower-risk solution by identifying new uses for existing, safety-tested medications. This approach has already transformed drugs originally developed for other conditions into life-changing therapies for rare genetic, metabolic, and neurodegenerative disorders. Read More
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Jun 3, 2025 Precision Genomics for Rare Diseases: Shaping the Future of TreatmentThe intersection of genomics and personalized medicine has transformed the landscape of healthcare. The Rare Genomics Institute (RG) emphasizes leveraging cutting-edge genomic technologies to identify the genetic basis of undiagnosed rare diseases and empowering patients with resources and the latest research. RG stands out from other organizations focused on rare diseases through its unique patient-centered approach. So far, RG has coordinated over 380 genetic sequencing projects and served over 825 families. Read More
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May 22, 2025 Funding challenges in Rare Disease Research: How financial support can transform the Rare Disease LandscapeRare diseases each affect few people, but together they impact up to 30 million Americans, revealing a silent healthcare crisis. Despite scientific advances, research remains underfunded, leading to delayed diagnoses, limited treatments, and gaps in care. Strategic investment—from government funding to public-private partnerships—is essential to accelerate breakthroughs and give millions a fair chance at timely diagnosis, effective treatment, and better quality of life. Read More
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We’d love to hear from you!
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Your experience matters. As we grow, we want to make our website as helpful and user-friendly as possible. Please take a few minutes to share your thoughts:
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Stay tuned for more! Together, we’ve come far, and together we’ll go further. Thank you for being part of our community. With gratitude, The Team at Rare Genomics Institute
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Trivia Answer Key: 1. c ; 2. c ; 3. b
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