NORD Newsroom

Founded in 1983, the National Organization for Rare Disorders (NORD) is the leading patient advocacy group dedicated to improving the health and well-being of all people with rare diseases by driving advances in care, research, and policy.

Contact Our News Team

Cheryl Herbert
Vice President of Marketing & Communications
[email protected]
203.304.7264 ext.405

Connor Rice
Senior Manager, Digital Marketing & Projects
[email protected]
475.208.3402 ext.404

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Recent Press Releases

More Than 30 Million Americans Living with Rare Diseases

February 23, 2026

Earn Your Stripes: NORD Launches Rare Disease Day® CME Challenge to Close Critical Gaps in Rare Disease Education

February 23, 2026

NORD Extends Exclusive CME Partnership with Medlive

January 6, 2026

Featured

National Organization for Rare Disorders Ranks All 50 States on Rare Disease Policies

February 9, 2026

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Rare Disease Day 2026 Official Video

January 1, 2026

Watch Now

EURORDIS: Raising Youth Voices Event

January 16, 2026

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National Organization for Rare Disorders Adds Seven Rare Disease Centers of Excellence Nationwide

December 3, 2025

Blogs & Stories

Light Up for Rare: How a Global Initiative Creates True Impact

Published: Jan, 2026

Every year on Rare Disease Day, landmarks around the world are illuminated in rare disease colours. Since the first edition in 2008, the Light Up for Rare initiative has become a powerful visual symbol of solidarity with the 300 million people living with a rare disease.