On September 8, The U.S. Department of Health and Human Services announced the selection of four new senior leaders at the U.S. Food and Drug Administration (FDA): Jared Seehafer, M.S., has…
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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).…
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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 —…
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Lightning round poster presentations highlight cutting-edge insights on issues ranging from Medicaid coverage disparities to real-world data innovation The future of rare disease advancements will take center stage at the …
Read moreThe NORD Rare Disease Scientific Symposium brought together a dynamic community of rare disease clinicians, researchers, and thought leaders for an unforgettable gathering of ideas, insights, and inspiration. If you missed …
Continue reading “NORD Scientific Symposium Full Session Recordings Available Now”
Read moreIn July 2025, Congress enacted one of the most significant federal tax reforms in recent memory, often referred to as the “One Big Beautiful Bill” (OBBBA). Buried within this sweeping …
Continue reading “Giving in a Changing Landscape: Why 2025 Matters for Rare Disease Families”
Read moreToday, on Rare Cancer Day, I am proud to recognize the 30 organizations that make up the NORD Rare Cancer Coalition. Rare cancers are part of the family of more …
Continue reading “NORD CEO Statement on Rare Cancer Day”
Read moreBy Melinda Bachini of the Cholangiocarcinoma Foundation In April 2012, I walked into the National Cancer Institute (NCI) as Patient 3737. While not being called by my name may be …
Continue reading “From Patient 3737 to Advocate: The Life-Changing Power of Clinical Trials”
Read moreOver $80,000 in Funding Supports Innovative Studies Targeting Two Critically Underserved Conditions The National Organization for Rare Disorders (NORD®) has awarded more than $82,000 in seed funding to two international …
Continue reading “NORD Awards 2025 Seed Grants to Advance Breakthroughs in Rare Disease Research”
Read more“From Records to Research” empowers patients, caregivers to take control of their health The National Organization for Rare Disorders (NORD®), the leading national nonprofit serving more than 30 million Americans …
Continue reading “NORD Unveils New, Free Data Literacy Course”
Read moreWASHINGTON, D.C., Aug. 21, 2025 — The future of rare disease care and innovation will take center stage in the nation’s capital this fall. The National Organization for Rare Disorders …
Read moreThe National Organization for Rare Disorders (NORD®), the leading national nonprofit serving more than 30 million Americans with rare diseases, announced five new requests for proposals (RFPs) totaling $245,000 in seed …
Read moreAdvait Wattal, a student advocate and NORD State Ambassador, shares how his commitment to public service sparked meaningful action in support of the rare disease community. His story shows the …
Continue reading “Advait Wattal’s Journey to Make a Difference”
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