August 13, 2026 — A National Newborn Screening Workgroup was announced by the Health Resources and Services Administration (HRSA) via public website (pending Federal Register publication on August 12, 2026).…
Read article
NORD Submits Formal Comments to CMS Urging Changes to Align the Final Rule with Congressional Intent and Protect Medically Frail People with Rare Diseases NORWELL, Mass., July 31, 2026 —…
Read article
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 moreFostering collaboration to drive progress in rare disease research By Tracey Sikora, Vice President of Research & Clinical Programs Rare disease research is full of obstacles — small patient populations, …
Continue reading “A Deeper Look at the New NORD Rare Disease Scientific Symposium”
Read moreDanbury, CT, March 21, 2025 – The National Organization for Rare Disorders (NORD®) launched NORD® Claim Your Care to help those living with rare diseases navigate a complicated health insurance …
Continue reading “National Organization for Rare Disorders (NORD) Launches NORD Claim Your Care”
Read moreFrom parachuting zebras to “Wicked” stars and breaking news from the NORD® Rare Disease Centers of Excellence, we’re thrilled to share our favorite moments from Rare Disease Day 2025! …
Continue reading “Highlights from Rare Disease Day 2025”
Read moreParamount to match funds donated to NORD in support of new film Novocaine QUINCY, Mass., Feb. 27, 2025 — The National Organization for Rare Disorders (NORD®) is teaming up with Paramount Pictures …
Continue reading “NORD, Paramount Pictures Join Forces to Raise Awareness of Rare Disease”
Read moreNew Mental Health Video Series Launches February 24 The National Organization for Rare Disorders (NORD®) is excited to announce a new collaboration with Bionews, a digital health solutions company dedicated …
Read moreExpanded Medicaid/CHIP Continuous Eligibility for Children, Step Therapy Reforms, andOut-of-Pocket Prescription Cost Protections Among 2024 State Improvements Feb. 19, 2025, Washington, D.C. — The National Organization for Rare Disorders (NORD®) today issued …
Read moreThink of 10 people you work with, 10 people you went to school with, or even 10 of your social media followers. Now, consider this: statistically, one in every 10 …
Continue reading “Rare Is Everywhere: Be a Champion to the Rare Disease Community This Feb. 28”
Read moreThere 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 moreNORD 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 …
Read morePlease complete this form to access the requested resource.
