National Organization for Rare Disorders

Ben Wilson
Father of Gabe, who lives with Bloom syndrome
Lead Global Ambassador for the Bloom Syndrome Association

Fatherhood often brings pride and hope, but a rare disease diagnosis can reshape a family’s fut...

D. Rolf Hill
Father of three girls: Sam, Polly, and Rebecca
Advocate for the Friedreich’s Ataxia Research Alliance (FARA)

This Father’s Day, NORD recognizes the fathers whose strength, advocacy, and commitment make a lasti...

Washington, D.C. — June 9, 2026 — The National Organization for Rare Disorders (NORD®), representing the 30 million Americans living with rare diseases, today announced the appointment of Kathryn Lowell as Executive Vice President (EVP), Government Affairs.

Kathryn Lowell, Executive Vice President, Government Affairs

In this role, Lowell will lead NORD...

Washington, D.C. — (June 3, 2026) — Yesterday 48 non-profit, non-partisan patient organizations issued a statement in response to the interim final rule implementing the new Medicaid work reporting requirement provisions in Public Law 119-21.

“Throughout the legislative process, lawmakers repeatedly promised that the patients we represent would...

Healthcare policies are most effective when they work for the most medically complex populations, including people living with rare diseases.

The National Organization for Rare Disorders (NORD®) is concerned that the newly released CMS Medicaid Community Engagement Requirements could create unintended challenges for people living with rare diseases and the caregivers w...