Published November 10, 2025 by NORD
First published July 23, 2024. Updated November 10, 2025 with new content and revisions. The National Organization for Rare Disorders (NORD) released a new report showing the undeniable effectiveness of …
Continue reading “Congress: Reauthorize the Rare Pediatric Disease Priority Review Voucher Program”
Read morePublished October 21, 2025 by NORD
Oct. 21, 2025 — U.S. Senator Amy Klobuchar joined the National Organization for Rare Disorders (NORD®) Rare Diseases & Orphan Products Breakthrough Summit® today, offering encouragement to an audience of …
Continue reading “Senator Amy Klobuchar Joins Rare Disease Community at National Gathering”
Read morePublished September 30, 2025 by NORD
Today, on Rare Cancer Day, I am proud to recognize the 30 organizations that make up the NORD Rare Cancer Coalition. Rare cancers are part of the family of more …
Continue reading “NORD CEO Statement on Rare Cancer Day”
Read morePublished June 30, 2025 by NORD
New council ensures thousands of Rhode Islanders living with rare diseases have a voice in state policy PROVIDENCE, R.I., June 30, 2025 — Rhode Island Gov. Daniel McKee has signed …
Continue reading “NORD Celebrates Rhode Island’s Historic Creation of Rare Disease Advisory Council”
Read morePublished May 14, 2025 by NORD
NORD’s advocacy helps Montana become 32nd state to create a dedicated council HELENA, MONT., May 14, 2025 — The National Organization for Rare Disorders (NORD®) celebrates Montana Gov. Greg Gianforte’s signing …
Read morePublished May 13, 2025 by NORD
New State Council Will Help Shape Health Policies for Arizonans Living with Rare Diseases PHOENIX, May 13, 2025 — The National Organization for Rare Disorders (NORD®) celebrates a significant milestone …
Continue reading “Arizona Becomes the 31st State With a Rare Disease Advisory Council”
Read morePublished May 1, 2025 by NORD
Congress is currently considering potentially sweeping funding cuts to Medicaid, a program that provides life-saving health care coverage and services to those who need it most. What is at stake …
Continue reading “Rare Faces of Medicaid: What’s at Stake for the Rare Community?”
Read morePublished April 4, 2025 by NORD
The sudden termination of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) raises serious concerns for the rare disease community and families nationwide. The ACHDNC is a critical part of the U.S. newborn screening system, providing guidance to the Secretary of the Department of Health and Human Services (HHS) on the most appropriate application of universal newborn screening tests, technologies, policies, guidelines, and standards.
Read morePublished February 14, 2025 by NORD
There are several proposed policy changes occurring across government entities, many of which have the potential to impact the rare disease community. At the National Organization for Rare Disorders (NORD®), …
Read morePublished February 10, 2025 by NORD
NORD offers comprehensive review on statewide practices related to screening sample retention, provides policy recommendations February 10, 2025, Washington, D.C. — The National Organization for Rare Disorders (NORD®) today published a …
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