Rare Disease News

Featured News

National Organization for Rare Disorders (NORD) Announces 2025 Industry Innovation and Rare Impact Award Honorees

National Organization for Rare Disorders (NORD) Announces 2025 Industry Innovation and Rare Impact Award Honorees

Published July 16, 2025 by NORD

Categorized in -

Annual Awards Celebrate Outstanding Contributions to Rare Disease Treatments, Advocacy, and Research QUINCY, Mass., July 16, 2025—The National Organization for Rare Disorders (NORD®) is honoring a distinguished group of industry … Continue reading "NORD CEO Statement on the Termination of the Advisory Committee on Heritable Disorders in Newborns and Children"...

Read article

News & Articles

NORD rare disease drug development ad.

NORD CEO Statement on the Termination of the Advisory Committee on Heritable Disorders in Newborns and Children

Published April 4, 2025 by NORD

Categorized in -

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 more

NORD, Bionews Partner to Bring Powerful Educational Content to Rare Disease Communities

Published February 21, 2025 by NORD

Categorized in -

New 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 …

Continue reading “NORD, Bionews Partner to Bring Powerful Educational Content to Rare Disease Communities”

Read more

NORD’s Latest Annual State Report Card Provides Crucial Benchmark as State Legislative Sessions Resume

Published February 19, 2025 by NORD

Categorized in -

Expanded 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 …

Continue reading “NORD’s Latest Annual State Report Card Provides Crucial Benchmark as State Legislative Sessions Resume”

Read more

NORD CEO Statement: Navigating Proposed Policy Changes and Their Impact on Rare Disease Advocacy

Published February 14, 2025 by NORD

Categorized in -

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®), …

Continue reading “NORD CEO Statement: Navigating Proposed Policy Changes and Their Impact on Rare Disease Advocacy”

Read more

National Organization for Rare Disorders (NORD) Issues New Report on Lifesaving Newborn Screening Programs

Published February 10, 2025 by NORD

Categorized in -

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 …

Continue reading “National Organization for Rare Disorders (NORD) Issues New Report on Lifesaving Newborn Screening Programs”

Read more
  2. 1
  3. 2
  4. 3
  5. 4
  6. 5
  7. 6
  8. 7
  9. ...
  10. 105
Sign Up for NORD News