Published October 28, 2025 by NORD
On-the-go app helps patients and caregivers share health information to support rare disease research The National Organization for Rare Disorders (NORD®), a leading national nonprofit serving more than 30 million …
Continue reading “NORD Unveils IAMRARE Mobile App Companion to IAMRARE Registry Platform”
Read morePublished October 14, 2025 by NORD
Lightning round poster presentations highlight cutting-edge insights on issues ranging from Medicaid coverage disparities to real-world data innovation The future of rare disease advancements will take center stage at the …
Read morePublished September 8, 2025 by NORD
Over $80,000 in Funding Supports Innovative Studies Targeting Two Critically Underserved Conditions The National Organization for Rare Disorders (NORD®) has awarded more than $82,000 in seed funding to two international …
Continue reading “NORD Awards 2025 Seed Grants to Advance Breakthroughs in Rare Disease Research”
Read morePublished August 13, 2025 by NORD
The National Organization for Rare Disorders (NORD®), the leading national nonprofit serving more than 30 million Americans with rare diseases, announced five new requests for proposals (RFPs) totaling $245,000 in seed …
Read morePublished June 30, 2025 by NORD
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 …
Continue reading “Accelerating Access to Information for the Rare Disease Community ”
Read morePublished June 17, 2025 by NORD
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 …
Continue reading “Answer the Call to Help Build a Healthier Future ”
Read morePublished June 5, 2025 by NORD
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 …
Read morePublished April 15, 2025 by NORD
Mila Makovec was only three years old when she began experiencing frequent seizures and losing her vision. For any parent, having a child with health problems is a scary scenario. …
Continue reading “Personalized medicine helps treat toddler with rare disease”
Read morePublished April 8, 2025 by NORD
The FDA approval of the first treatment for Friedreich’s Ataxia (FA) on Rare Disease Day in 2023 marked a significant milestone for the estimated 5,000 people in the U.S. and …
Continue reading “Guest Blog: The Power of Patient Advocacy in Drug Development”
Read morePublished April 4, 2025 by NORD
Fostering collaboration to drive progress in rare disease research By Tracey Sikora, Vice President of Research & Clinical Programs Rare disease research is full of obstacles — small patient populations, …
Continue reading “A Deeper Look at the New NORD Rare Disease Scientific Symposium”
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