#rare
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...
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...
TSC and Me Campaign Launches to Build a Connected Community and Combat Rare Disease Isolation
A new social media initiative has been launched to unite individuals and families affected by Tuberous Sclerosis Complex, offering a...
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...