Rare Diseases & Conditions
Top Federal Health Officials to Headline NORD’s 2026 Rare Diseases and Orphan Products Breakthrough Summit in Washington, D.C.
WASHINGTON, D.C. and NORWELL, Mass. — Three of the nation’s most influential federal health leaders are set to take center...
NORD Awards Over $145,000 in Seed Grants to Advance Research into Four Underserved Rare Diseases
QUINCY, Mass. — The National Organization for Rare Disorders (NORD®), the leading national nonprofit serving the estimated 30 million Americans...
New National Newborn Screening Workgroup Established to Restore RUSP Review Pathway Following Federal Committee Dissolution
Posted August 13, 2026 by NORD WASHINGTON — In a significant development for public health and the rare disease community,...
NORD and Rosenau Family Research Foundation Launch Free Online Series to Inspire the Next Generation of Rare Disease Researchers
NORWELL, Mass. — In an effort to address a critical workforce pipeline in medical science, the National Organization for Rare...
Advocates Take to Capitol Hill to Highlight the Severe Challenges Facing 1 in 4 Cancer Patients Diagnosed with a Rare Cancer
WASHINGTON, D.C. and NORWELL, Mass. — Marking Rare Cancer Day on September 23, 2026, a coalition of patients, caregivers, medical...
National Organization for Rare Disorders Honors Industry Innovators, Medical Trailblazers, and Patient Advocates with 2026 Rare Impact Awards
The National Organization for Rare Disorders (NORD®) has officially announced its distinguished lineup of honorees for the annual NORD Rare...
NORD Announces Over $145,000 in Seed Grants to Advance Research for Four Underserved Rare Diseases
QUINCY, Mass. — The National Organization for Rare Disorders (NORD®), the leading national nonprofit serving more than 30 million Americans...
Vermont Establishes Rare Disease Advisory Council After Historic Legislative Victory
Vermont has officially made history for its medical and patient advocacy communities. On May 13, 2026, the Vermont Legislature successfully...
National Organization for Rare Disorders Mourns the Passing of Former U.S. Senator Nancy Kassebaum Baker, Champion of the Orphan Drug Act
The National Organization for Rare Disorders (NORD) has expressed its profound sorrow following the passing of former U.S. Senator Nancy...
NORD Welcomes Key FDA Leadership Appointments to Support the Rare Disease Community
WASHINGTON — On September 8, the U.S. Department of Health and Human Services announced the selection of four new senior...