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National Organization for Rare Disorders (NORD) Announces 2025 Industry Innovation and Rare Impact Award Honorees

Published July 16, 2025 by NORD

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Annual Awards Celebrate Outstanding Contributions to Rare Disease Treatments, Advocacy, and Research QUINCY, Mass., July 16, 2025—The National Organization for Rare Disorders (NORD®) is honoring a distinguished group of industry … Continue reading "National Organization for Rare Disorders (NORD) Announces 2025 Industry Innovation and Rare Impact Award Honorees"...

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News & Articles

After Two Centuries, the Parry Romberg Syndrome Community Needs Answers

Published July 2, 2025 by NORD

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In this NORD Guest Blog, the founder of the Parry Romberg Foundation discusses the 1825-2025 history of PRS and what this moment means for hundreds of Americans with this life-altering …

Continue reading “After Two Centuries, the Parry Romberg Syndrome Community Needs Answers”

NORD Celebrates Rhode Island’s Historic Creation of Rare Disease Advisory Council

Published June 30, 2025 by NORD

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New council ensures thousands of Rhode Islanders living with rare diseases have a voice in state policy PROVIDENCE, R.I., June 30, 2025 — Rhode Island Gov. Daniel McKee has signed …

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Accelerating Access to Information for the Rare Disease Community 

Published June 30, 2025 by NORD

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If you’re living with a rare disease — or caring for someone who is — you’ve likely faced the challenge of trying to understand a condition that your doctor hasn’t …

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Answer the Call to Help Build a Healthier Future 

Published June 17, 2025 by NORD

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Research

We’re all human, but we’re not all the same. Often, our differences — like age, lifestyle habits, or where we live — can reveal important insights about our health. The …

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First Rare Disease Therapy Developed with a NORD IAMRARE Patient Registry Secures FDA Approval

Published June 5, 2025 by NORD

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QUINCY, Mass., June 5, 2025 – The National Organization for Rare Disorders (NORD®) proudly announces a major milestone: for the first time, patient data collected through the NORD IAMRARE® patient …

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Find Your Herd Through Running for Rare This Global Running Day

Published June 4, 2025 by NORD

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Running for Rare

Living with a rare disease means that Amanda is one of 30 million-plus “zebras” in the United States – and while she may be rare, she’s not alone. Amanda is …

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In Memory of Kate O’Bara: Raising Awareness for Vascular EDS

Published May 27, 2025 by NORD

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Patient Stories

By Laura O’Bara for Ehlers-Danlos Syndrome Awareness Month When you asked me to tell you how Ehlers-Danlos syndrome (EDS) type IV affected my daughter Kate’s life, I had to stop and think …

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FDA CBER Director Dr. Vinay Prasad to Keynote NORD’s Inaugural Rare Disease Scientific Symposium, Convening Top Researchers, Industry Leaders, and Federal Regulators

Published May 23, 2025 by NORD

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WASHINGTON, May 23, 2025 –The National Organization for Rare Disorders (NORD®) will convene leading voices in science, industry, and regulation at its inaugural Rare Disease Scientific Symposium, a two-day conference …

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In Honor of Eddie — A Story of Courage, Love, and an Unbreakable Bond

Published May 15, 2025 by NORD

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Patient Stories

For MPS Awareness Day, May 15 By Debra Bell, mother of Eddie James Bell Jr. (July 29, 1981 – April 4, 2022) It’s hard to know where to begin when …

Continue reading “In Honor of Eddie — A Story of Courage, Love, and an Unbreakable Bond”

Rare Disease News

Featured News

National Organization for Rare Disorders (NORD) Announces 2025 Industry Innovation and Rare Impact Award Honorees

News & Articles

After Two Centuries, the Parry Romberg Syndrome Community Needs Answers

NORD Celebrates Rhode Island’s Historic Creation of Rare Disease Advisory Council

Accelerating Access to Information for the Rare Disease Community

Answer the Call to Help Build a Healthier Future

First Rare Disease Therapy Developed with a NORD IAMRARE Patient Registry Secures FDA Approval

Find Your Herd Through Running for Rare This Global Running Day

In Memory of Kate O’Bara: Raising Awareness for Vascular EDS

FDA CBER Director Dr. Vinay Prasad to Keynote NORD’s Inaugural Rare Disease Scientific Symposium, Convening Top Researchers, Industry Leaders, and Federal Regulators

In Honor of Eddie — A Story of Courage, Love, and an Unbreakable Bond

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