Rare Diseases & Conditions
Unseen and Uncharted: How One Patient’s Routine Surgery Uncovered a Rare Stage 4 Cancer Diagnosis
In recognition of Rare Cancer Day, the National Organization for Rare Disorders (NORD) has shared the powerful, firsthand account of...
Top Federal Health Officials to Headline Nation’s Largest Rare Disease Gathering in Washington, D.C.
WASHINGTON, D.C. and NORWELL, Mass. — Three of the nation’s most prominent federal health leaders are set to address more...
National Newborn Screening Workgroup Established to Restore Federal RUSP Review Process
August 13, 2026 — In a major development for the nation’s public health and rare disease communities, the Health Resources...
NORD and Rosenau Family Research Foundation Launch Free Online Series to Inspire Next Generation of Rare Disease Scientists
NORWELL, Mass. — In an effort to address a critical workforce pipeline challenge in medical science, the National Organization for...
Advocates Highlight Challenges Facing 1 in 4 Cancer Patients Diagnosed with a Rare Cancer
WASHINGTON, D.C. and NORWELL, Mass. — Patients, caregivers, medical advocates, and clinicians converged on Capitol Hill to draw urgent national...
NORD Announces 2026 Rare Impact Award Honorees for Advancing Treatments, Research, and Policy in Rare Disease Care
The National Organization for Rare Disorders (NORD®) has announced its distinguished slate of honorees for the annual NORD Rare Impact...
NORD Expands National Rare Disease Centers of Excellence Network With New Additions in California, New York, and North Carolina
NORWELL, Mass. — The National Organization for Rare Disorders (NORD®) announced the addition of three new institutions to its prestigious...
Finding Strength in the Shadows: One Patient’s Journey with Invisible Rare Cancer and Advocacy
In recognition of Rare Cancer Day, the National Organization for Rare Disorders (NORD) has shared the powerful, deeply personal story...
Vermont Makes History as Governor Phil Scott Signs Legislation Establishing Rare Disease Advisory Council
MONTPELIER, Vt. — Vermont has officially made legislative history for its medical and patient advocacy communities. On May 13, 2026,...
Former U.S. Senator Nancy Kassebaum Baker Remembered for Transformative Role in Rare Disease Legislation and the Passage 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...