Published July 1, 2026 by NORD
A study published in the Archives of Dermatological Research demonstrates how a large national population cohort can shed light on rare disease risks that have previously been understudied. Using the …
Read morePublished June 2, 2026 by NORD
When researchers at NORD Rare Disease Center of Excellence Vanderbilt University Medical Center set out to understand how pulmonary arterial hypertension (PAH) affects patients’ daily lives, they turned to the …
Read morePublished May 6, 2026 by NORD
Advancing Innovation in Rare Disease Research At NORD’s 2nd Annual Rare Disease Scientific Symposium, the central question was not whether rare disease innovation is possible, but how to make it …
Continue reading “2026 Rare Disease Scientific Symposium: Event Recap and Recordings”
Read morePublished March 12, 2026 by NORD
NORWELL, Mass., and MIAMI, Fla. (March 12, 2026) – The National Organization for Rare Disorders (NORD®) and OpenEvidence today announced a new partnership to expand access to trusted, expert-reviewed rare …
Read morePublished February 24, 2026 by NORD
NORD is encouraged by efforts to strengthen and clarify regulatory tools that advance rare disease treatments. For conditions with extremely small patient populations, where traditional clinical trials are difficult to …
Read morePublished February 5, 2026 by NORD
Leaders across research, clinical care, industry, and patient advocacy convene to accelerate rare disease breakthroughs from discovery to real-world patient impact Norwell, Ma., Feb. 5, 2026 — The National Organization …
Read morePublished January 21, 2026 by NORD
How All of Us Data Reveals Scientific Insights A recent genomic analysis published in PLOS Genetics illustrates how large, diverse population cohorts can generate rare disease insights that are often …
Continue reading “Advancing Rare Disease Research with General Population Cohorts”
Read morePublished November 14, 2025 by NORD
Implementation of two new patient registries on the IAMRARE® platform funded by RDCA-DAP® DANBURY, Conn., Nov. 14, 2025 — The National Organization for Rare Disorders (NORD®), a leading national nonprofit …
Continue reading “NORD Launches New RFP for Patient Registries”
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 …
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