This notice announces the public meeting of the Advisory Council on Alzheimer's Research, Care, and Services (Advisory Council). The Advisory Council provides advice on how to prevent or reduce the burden of Alzheimer's disease and related dementias on people with the disease and their caregivers. During the first meeting of 2026, HHS will introduce and swear in a new slate of Advisory Council members. Federal agencies will provide an overview of their work under the National Alzheimer's Project

Original title: “Advisory Council on Alzheimer's Research, Care, and Services; Meeting”

Cerebral palsy is a group of disorders affecting a person’s movement, balance, and posture.

Original title: “Cerebral Palsy (CP)”

Learn about cerebral palsy: symptoms, causes, screening, treatment, and CDC's work.

Original title: “About Cerebral Palsy”

How ​All of Us Data​ Reveals Scientific Insights​ A recent genomic analysis published in PLOS Genetics illustrates how large, diverse population cohorts can generate rare disease insights that are often … Continue reading "Advancing Rare Disease Research with General Population Cohorts"

Original title: “Advancing Rare Disease Research with General Population Cohorts”

Take a closer look at the event's six thematic tracks. The post ECRD 2026: Advancing rare disease policies in a changing and competitive Europe appeared first on EURORDIS-Rare Diseases Europe.

Original title: “ECRD 2026: Advancing rare disease policies in a changing and competitive Europe”

Kris Kusidlo explains the importance of the Childhood Dementia Initiative and how their work relates to the wider community. The post Building global consensus: Why unified terminology matters for childhood dementia and all rare diseases appeared first on EURORDIS-Rare Diseases Europe.

Original title: “Building global consensus: Why unified terminology matters for childhood dementia and all rare diseases”

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

Global Genes and University of Notre Dame have partnered to launch the Research Acceleration Program, a collaborative […] The post Accelerating Rare Disease Research Through Collaboration: Global Genes and Notre Dame Launch the Research Acceleration Program appeared first on Global Genes.

Original title: “Accelerating Rare Disease Research Through Collaboration: Global Genes and Notre Dame Launch the Research Acceleration Program”

Looking ahead, the organisation ... to key advocacy themes, such as patient safety and patient involvement. Potential future sites include the Food and Drugs Authority or one of Accra’s most iconic landmarks, the Black Star Gate. Our dream is that organisations will one day light up their own buildings for Rare Disease ... Looking ahead, the organisation hopes to link future light-ups even more closely to key advocacy themes, such as patient safety and patient involvement. Potential future sites include the Food and Drugs Authority or one of Accra’s most iconic landmarks, the Black Star Gate. Our dream is that organisations will one day light up their own buildings for Rare Disease Day.“ Every year on Rare Disease Day, landmarks around the world are illuminated in rare disease colours. Since the first edition in 2008, the Light Up… Continue reading Light Up for Rare: How a Global Initiative Creates True Impact These moments create space to discuss the realities of living with a rare disease — and the urgent need for policy change. While coordinators handle the technical and administrative negotiations, patients and families remain central to the advocacy message. Every year on Rare Disease Day, landmarks around the world are illuminated in rare disease colours. Since the first edition in 2008, the Light Up for Rare initiative has become a powerful visual symbol of solidarity with the 300 million people living with a rare disease. But behind every illuminated building lies a foundation of conversations, persistence, and communities coming together.

Original title: “Light Up for Rare: How a Global Initiative Creates True Impact - Rare Disease Day 2026”

In accordance with the Federal Advisory Committee Act, the Centers for Disease Control and Prevention (CDC) announces the following meeting of the Advisory Board on Radiation and Worker Health (ABRWH). 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 meeting by joining the audio conference (information below). The audio confe

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

45 people across 21 states have gotten sick with the same strain of Salmonella.

Original title: “Live It Up Super Greens supplement powders linked to new <em>Salmonella</em> outbreak”

Rare Disease Day® is an international event held on the last day of February to raise awareness about the impact of rare diseases on patients’ lives and to emphasize the need for research. To mark … To mark this day, the WashU Medicine Center for Rare, Undiagnosed & Genetic Diseases hosts an annual Rare Disease Day Symposium at Washington University Medical Campus bringing together those working on rare diseases to collaborate, share experiences, work through obstacles and discuss the future of rare diseases, and inspire young scientists and clinicians to choose a path in rare diseases.

Original title: “2026 Rare Disease Day Symposium | Office of Technology Management/Tech Transfer | Washington University in St. Louis”

Virginie Hivert offers an honest, behind-the-scenes look at recent developments at EURORDIS-Rare Diseases Europe. The post A message from Virginie Hivert, our Acting CEO, to our Members appeared first on EURORDIS-Rare Diseases Europe.

Original title: “A message from Virginie Hivert, our Acting CEO, to our Members”

Because patient populations are small, the traditional health care business model doesn't support investment in rare disease therapies. “I see this as a three-legged stool,” Willey explained. “You have the venture, the patient advocacy and the research. It’s a powerful triangulation of resources, particularly for rare disease. Access to cures shouldn’t depend on where a child is born or whether a disease is commercially viable.” Beattie said they are looking for “new ways to fund hope.” · McPherson’s work in regulation crowdfunding (an SEC rule that allows startups to raise funds through small investments from many people) began with his quest to find a cure for his daughter’s rare genetic condition, HNRNPH2-related neurodevelopmental disorder. He created a foundation and with the help of journalists began to share their story. The treatment of rare diseases has driven innovation beyond the lab – creative new funding models are advancing research and cures. Because patient populations are small, the traditional health care business model often does not support investment in rare disease therapies. Thirty percent of those children die before age 5, and only 5% of more than 10,000 rare diseases have an approved treatment. “This is bigger than cancer and AIDS,” McPherson said. He called the failure to treat genetic disease a civil rights issue. “When we look at the fact that we do have technology to help patients, but we do nothing to change our systems to enable that technology, then it’s on us,” McPherson said.

Original title: “Rare Disease Funding Called 'Modern-Day Civil Rights Issue' - National Press Foundation | NPF”

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Original title: “You’re Invited: FDA's Rare Disease Day 2026”

Our Patient Engagement Manager introduces the RealiseD project that aims to accelerate clinical trial innovation for rare diseases. The post Rita Francisco: More Clinical Trial Innovation Than You Can Imagine to be RealiseD  appeared first on EURORDIS-Rare Diseases Europe.

Original title: “Rita Francisco: More Clinical Trial Innovation Than You Can Imagine to be RealiseD ”

As we kick off the new year, the EveryLife Foundation for Rare Diseases is excited to welcome a new Chair to our Board of Directors, as well as two new Board Members. […] The post The EveryLife Foundation Welcomes Board Chair and Two New Members appeared first on EveryLife Foundation for Rare Diseases.

Original title: “The EveryLife Foundation Welcomes Board Chair and Two New Members”

Antje Enekwe reflects on the daily challenges and the resilience that comes with raising a child with Smith-Lemli-Opitz syndrome. The post Parenting a Child with Smith-Lemli-Opitz Syndrome appeared first on EURORDIS-Rare Diseases Europe.

Original title: “Parenting a Child with Smith-Lemli-Opitz Syndrome”

Partnership focuses on delivering high-quality medical education to improve rare disease patient outcomes BOSTON AND WASHINGTON, D.C., January 6, 2026 – Medlive and the National Organization for Rare Disorders® are … Continue reading "NORD Extends Exclusive CME Partnership with Medlive"

Original title: “NORD Extends Exclusive CME Partnership with Medlive”

Original title: “National Institute on Minority Health and Health Disparities; Notice of Partially Closed Meeting”