In accordance with the Federal Advisory Committee Act, the Centers for Disease Control and Prevention (CDC) announces the following meeting for the Subcommittee on Procedures Reviews (SPR) of the Advisory Board on Radiation and Worker Health (ABRWH or the Advisory Board). This meeting is open to the public, but without a public comment period. The public is welcome to submit written comments in advance of the meeting, to the contact person below. The public is also welcome to listen to the meeti

Original title: “Meeting of the Advisory Board on Radiation and Worker Health, Subcommittee for Procedure Reviews, National Institute for Occupational Safety and Health”

Original title: “National Institute of General Medical Sciences; Notice of Partially Closed Meeting”

Sixty-four people across 22 states have gotten sick with the same strain of Salmonella.

Original title: “Raw oysters linked to ongoing <em>Salmonella </em>outbreak; almost half of U.S. states reporting cases”

The Agency for Toxic Substances and Disease Registry (ATSDR), as part of its continuing effort to reduce public burden and maximize the utility of government information, invites the general public and other federal agencies the opportunity to comment on a continuing information collection, as required by the Paperwork Reduction Act of 1995. This notice invites comment on a proposed information collection project titled National Amyotrophic Lateral Sclerosis (ALS) Registry. The National ALS Regi

Original title: “Proposed Data Collection Submitted for Public Comment and Recommendations”

Original title: “National Institute of Environmental Health Sciences; Notice of Partially Closed Meeting”

Original title: “National Library of Medicine; Notice of Partially Closed Meeting”

The Senate’s failure to advance the Give Kids a Chance Act through unanimous consent is deeply disappointing.  For more than a year, thousands of rare disease advocates have engaged lawmakers … Continue reading "Statement from Pamela Gavin, CEO, National Organization for Rare Disorders (NORD) on the Senate Failure to Approve the Give Kids a Chance Act By Year-End"

Original title: “Statement from Pamela Gavin, CEO, National Organization for Rare Disorders (NORD) on the Senate Failure to Approve the Give Kids a Chance Act By Year-End”

The post TREAT-NMD® Conference 2026 appeared first on EURORDIS-Rare Diseases Europe.

Original title: “TREAT-NMD® Conference 2026”

Our summary of last week's three-day conference in Brussels. The post From High-Level Declaration to a Blueprint for Action: What the High-Level Meeting on rare diseases confirmed about Europe’s potential  appeared first on EURORDIS-Rare Diseases Europe.

Original title: “From High-Level Declaration to a Blueprint for Action: What the High-Level Meeting on rare diseases confirmed about Europe’s potential ”

The National Organization for Rare Disorders (NORD) applauds the Department of Health and Human Services (HHS) for adding metachromatic leukodystrophy (MLD) and Duchenne muscular dystrophy (DMD) to the Recommended Uniform … Continue reading "NORD CEO Statement on the Addition of Metachromatic Leukodystrophy (MLD) and Duchenne Muscular Dystrophy (DMD) to the Recommended Uniform Screening Panel"

Original title: “NORD CEO Statement on the Addition of Metachromatic Leukodystrophy (MLD) and Duchenne Muscular Dystrophy (DMD) to the Recommended Uniform Screening Panel”

We welcome this step towards strengthening Europe’s capacity to innovate in rare disease medicine. The post EURORDIS welcomes the Commission’s ‘promising’ Biotech Act I  appeared first on EURORDIS-Rare Diseases Europe.

Original title: “EURORDIS welcomes the Commission’s ‘promising’ Biotech Act I ”

Fact Sheet Hepatitis B Immunization

Original title: “Fact Sheet Hepatitis B Immunization”

Wednesday 25th of February 2026, DoubleTree by Hilton, Brussels Rare diseases have been highlighted as a key area within the EU Life Sciences Strategy, and at its core, the forthcoming Biotech Act represents a major legislative instrument to advance the priorities of rare disease patients in Europe. This workshop will be built around our community’s perspectives on the opportunity to align biotechnology innovation with patients’ needs and […] The post 41st Workshop of the EURORDIS Round Table of

Original title: “41st Workshop of the EURORDIS Round Table of Companies: Forging faster and fairer pathways to deliver innovation and clinical impact (working title)”

Ralph Abraham, M.D., was sworn in today as Principal Deputy Director of the CDC.

Original title: “Secretary Kennedy Swears in Louisiana Surgeon General Ralph Abraham as Principal Deputy Director of CDC”

Original title: “Center for Scientific Review; Cancellation of Meeting”

Children participating in clinical trials received a huge surprise.

Original title: “WWE Superstars visit pediatric research participants at NIH Clinical Center and The Children’s Inn”

Regla María Garci Espejo recounts growing up alongside her sister, who lived with a severe early-onset form of epilepsy. The post Growing up with a sister with West syndrome appeared first on EURORDIS-Rare Diseases Europe.

Original title: “Growing up with a sister with West syndrome”

The CDC has released an update on the ongoing investigation of infant botulism cases

Original title: “CDC's Rapid Response Helps Solve First Infant Botulism Outbreak Linked to Formula”

How EURORDIS' contributions are shaping the partnership's development. The post Joining the Dots: EURORDIS’ role in ERDERA and the reshaping of rare disease research  appeared first on EURORDIS-Rare Diseases Europe.

Original title: “Joining the Dots: EURORDIS’ role in ERDERA and the reshaping of rare disease research ”

The post International Symposium on Sjögren’s Disease (ISSjD) 2026  appeared first on EURORDIS-Rare Diseases Europe.

Original title: “International Symposium on Sjögren’s Disease (ISSjD) 2026 ”