Published November 14, 2025 by NORD
For one powerful day in Milwaukee, more than 110 people impacted by rare diseases — patients, caregivers, families, clinicians, and advocates — came together to share something simple yet profound: …
Read morePublished November 10, 2025 by NORD
First published July 23, 2024. Updated November 10, 2025 with new content and revisions. The National Organization for Rare Disorders (NORD) released a new report showing the undeniable effectiveness of …
Continue reading “Congress: Reauthorize the Rare Pediatric Disease Priority Review Voucher Program”
Read morePublished October 29, 2025 by NORD
The 2025 NORD® Rare Diseases & Orphan Products Breakthrough Summit® was more than a gathering. It was a declaration. Well over 800 patient advocates, families, researchers, clinicians, and industry showed …
Continue reading “From Voices to Breakthroughs: Celebrating the 2025 NORD Breakthrough Summit”
Read morePublished 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 October 2, 2025 by NORD
In July 2025, Congress enacted one of the most significant federal tax reforms in recent memory, often referred to as the “One Big Beautiful Bill” (OBBBA). Buried within this sweeping …
Continue reading “Giving in a Changing Landscape: Why 2025 Matters for Rare Disease Families”
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 25, 2025 by NORD
“From Records to Research” empowers patients, caregivers to take control of their health The National Organization for Rare Disorders (NORD®), the leading national nonprofit serving more than 30 million Americans …
Continue reading “NORD Unveils New, Free Data Literacy Course”
Read morePublished August 21, 2025 by NORD
WASHINGTON, D.C., Aug. 21, 2025 — The future of rare disease care and innovation will take center stage in the nation’s capital this fall. The National Organization for Rare Disorders …
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 …
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