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

Original title: “National Institute of Arthritis and Musculoskeletal and Skin Diseases; Notice of Partially Closed Meeting”

The post 23rd International Conference on Duchenne and Becker Muscular Dystrophy appeared first on EURORDIS-Rare Diseases Europe.

Original title: “23rd International Conference on Duchenne and Becker Muscular Dystrophy”

CDC announced its Traveler-Based Genomic Surveillance program surpassed one million participants

Original title: “CDC Surpasses 1 Million Voluntary Air Travel Participants in Biosurveillance Program”

Young Worker Resources

Original title: “Young Workers Resources”

The Department of Health and Human Services (HHS) (Department) has created the Interagency Pain Research Coordinating Committee (IPRCC) and is seeking nominations for this committee.

Original title: “National Institute of Neurological Disorders and Stroke, Interagency Pain Research Coordinating Committee Call for Committee Membership Nominations”

As of January 29, a total of 65 people in 28 states have now been reported

Original title: “New recall in <em>Salmonella</em> outbreak linked to dietary supplements containing moringa leaf powder”

The U.S. Department of Health and Human Services' Office on Women's Health announces an opportunity for non-Federal and private sector organizations and entities to co-sponsor the inaugural HHS National Conference on Women's Health. The conference will take place at the Omni Shoreham Hotel in Washington, DC, on March 11-13, 2026. The conference will address breakthroughs in research, prevention, diagnosis, and treatment of health conditions that affect women across the lifespan. It will explore

Original title: “HHS Inaugural National Conference on Women's Health”

Conditions: IBM; IIM; Myositis; Inflammatory Myopathy; Dermatomyositis; Dermatomyositis, Juvenile; Anti-synthetase Syndrome; Immune-Mediated Necrotizing Myopathy; Polymyositis; Inclusion Body Myositis; Juvenile Myositis; Juvenile Dermatomyositis Interventions: Other: No intervention - qualitative and mixed methods investigations Sponsors: Myositis International Health & Research Collaborative Alliance Foundation; MIHRA Patient Advisory; Myositis Australia; CureJM; The Myositis Association; The D

Original title: “MIHRA - Patient-Rooted Insights for Shaping Myositis Science (PRISMS)”

During this virtual event, NORD’s policy team will provide updates on legislation that we are monitoring. We’ll also share our perspective on key issues to During this virtual event, NORD’s policy team will provide updates on legislation that we are monitoring. We’ll also share our perspective on key issues to keep an eye on throughout the year, and information on opportunities to get involved in rare disease advocacy.

Original title: “Rare Disease Advocacy in 2026: Policy Updates and Making an Impact - National Organization for Rare Disorders”

Rare Disease Day is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease. Rare Disease Day is observed every year on 28 February (or 29 February on a leap year – the rarest day of the year). It was established and is coordinated by EURORDIS in partnership with over 70 national alliance patient organisations. The day serves as a powerful focal point, driving advocacy efforts at local, national, and international levels. Since its creation in 2008, Rare Disease Day has played a crucial role in building an international rare disease community – multi-disease, global, and diverse, yet united in purpose. We’d love to include your voice in our Rare Disease Day campaign. For Rare Disease Day in 2024, we shared stories from our amazing community, along with facts and figures about leukodystrophy are rare disease.

Original title: “Rare Disease Day - Alex - The Leukodystrophy Charity”

Global Genes is excited to announce “RARE-X: A patient-driven approach for collecting symptom and patient-reported outcome data […] The post Publication Announcement — RARE-X: Advancing Rare Disease Research Through Patient-Driven Data appeared first on Global Genes.

Original title: “Publication Announcement — RARE-X: Advancing Rare Disease Research Through Patient-Driven Data”

This page is a collection of patient and caregiver resources relating to older adult falls.

Original title: “Patient & Caregiver Resources”

Find out more about rabies disease, how it spreads, who's at risk, and how to prevent it.

Original title: “About Rabies”

Learn more about how to stay safe swimming during the summer.

Original title: “Summer Swim Safety”

Enter your email address to subscribe to this blog and receive notifications of new posts by email Deadline to order is February 10, 2026 so you can receive before Rare Disease Day! Wear your shirt on Rare Disease Day, February 28th OAA’s #rarediseaseday2026 t-shirt design showcase all our rare disorders! Our Kids /

Original title: “Rare Disease Day 2026 - OAA Tshirt Fundraiser → Organic Acidemia Association”

The post Connect CACNA1C Global Network Conference appeared first on EURORDIS-Rare Diseases Europe.

Original title: “Connect CACNA1C Global Network Conference”

The post ADOA-plus Day appeared first on EURORDIS-Rare Diseases Europe.

Original title: “ADOA-plus Day”

New York, Monday, January 26, 2026 – In recognition of Rare Disease Day on February 28, the Muscular Dystrophy Association (MDA) is sharing powerful community stories throughout the month that reflect how connection, research, and advocacy are advancing care and opportunity for people living ... New York, Monday, January 26, 2026 – In recognition of Rare Disease Day on February 28, the Muscular Dystrophy Association (MDA) is sharing powerful community stories throughout the month that reflect how connection, research, and advocacy are advancing care and opportunity for people living with rare neuromuscular diseases. MDA is the #1 health nonprofit advancing research, care and advocacy for people living with muscular dystrophy, ALS, and related neuromuscular diseases. Rare Disease Day is observed globally on February 28 to prompt action through increased awareness, research, and community engagement. MDA encourages people diagnosed with a neuromuscular condition and their families to engage with its year-round programming—including educational webinars, support groups, advocacy initiatives, and community events—to stay informed and connected. Early on, her family was learning how to support a child with a rare, complex condition. Now at 23, Gabrielle is an adult building her future. She is pursuing graduate study in clinical mental health counseling, with the goal of one day opening her own clinic to serve underrepresented communities including people living with disabilities. Gabrielle credits MDA’s support in helping shape her career goals and her advocacy work.

Original title: “Muscular Dystrophy Association Marks Rare Disease Day by Spotlighting Community Stories Driving Progress in Research, Care, and Advocacy | Muscular Dystrophy Association”

Conditions: Polycythemia Vera; ET (Essential Thrombocythemia); Polycythemia Vera (PV); Essential Thrombocythemia (ET); Primary Myelofibrosis (MF); Primary Myelofibrosis (PMF); Myelofibrosis; Myelofibrosis (MF); Myelofibrosis, Primary; Myelofibrosis, Post ET; Myelofibrosis, Post PV; Myelofibrosis (PMF); Myelofibrosis，MF; Myelofibrosis; Primary Myelofibrosis; Post-polycythemia Vera Myelofibrosis; Post-essential Thrombocythemia Myelofibrosis; Myelofibrosis Due to and Following Polycythemia Vera; My

Original title: “MPN PROGRESSion Registry: Observational Study Tracking Symptoms, Treatments, and Disease Progression in People With Myeloproliferative Neoplasms (MPNs)”