Rare Disease News

More Than 30 Million Americans Living with Rare Diseases

Published February 23, 2026 by NORD

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NORD Calls on Nation to “Show Your Stripes” on Global Rare Disease Day, Feb. 28 NORWELL, Mass., FEB. 23, 2026 – The National Organization for Rare Disorders (NORD®) is calling attention to rare diseases …

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Highlights from Rare Disease Day 2025

Published March 11, 2025 by NORD

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From parachuting zebras to “Wicked” stars and breaking news from the NORD® Rare Disease Centers of Excellence, we’re thrilled to share our favorite moments from Rare Disease Day 2025! …

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NORD, Paramount Pictures Join Forces to Raise Awareness of Rare Disease

Published February 27, 2025 by NORD

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Paramount to match funds donated to NORD in support of new film Novocaine QUINCY, Mass., Feb. 27, 2025 — The National Organization for Rare Disorders (NORD®) is teaming up with Paramount Pictures …

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Rare Is Everywhere: Be a Champion to the Rare Disease Community This Feb. 28

Published February 19, 2025 by NORD

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Think of 10 people you work with, 10 people you went to school with, or even 10 of your social media followers. Now, consider this: statistically, one in every 10 …

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Hack Rare: Engaging the Next Generation of Rare Disease Innovators

Published February 7, 2025 by NORD

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By Aditya Tummala, Sydney Wiredu, Derek Liu, and Pranav Ramesh Harvard College, Class of 2026 Long-time researchers in the field of rare diseases know what it’s like to experience a …

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Fighting Isolation When You Are One in a Million: Gabby’s Story in Honor of Rare Disease Day

Published February 29, 2024 by NORD

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By Gabrielle Z. A very special person once told me: “You are dealt the cards in this life that only you are meant to handle.” My name is Gabrielle but …

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Living a Full Life After Diagnosis: Risa’s Story in Honor of Rare Disease Day

Published February 29, 2024 by NORD

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By Risa A. My name is Risa and I have Acromegaly. From the NORD Rare Disease Report: Acromegaly is a rare, slowly progressive, acquired disorder that affects adults, most …

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Challenges Are Just Waiting for Solutions: Allison’s Story in Honor of Rare Disease Day

Published February 26, 2024 by NORD

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By Allison R. My ultra-rare disease, Cryopyrin Associated Periodic Syndrome (CAPS) has been isolating, defeating, and has made me feel helpless—but not hopeless. It has caused changes of career paths …

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Overcoming the Obstacles: Sareena’s Story in Honor of Rare Disease Day

Published February 23, 2024 by NORD

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By Sareena Z. My name is Sareena and I was diagnosed with severe Factor VII deficiency when I was two months old. I am now 28 years old. Factor VII …

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New Trajectories and Everyday Struggles: Thomas’s Story in Honor of Rare Disease Day

Published February 16, 2024 by NORD

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By Thomas B. I’m a patient living with Myasthenia Gravis, a rare neuromuscular autoimmune disease that affects the voluntary muscles. The immune system kills the chemical receptors in our muscles …

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