Free, online learning series and career exploration toolkit introduce aspiring scientists to rare disease research through real-world case studies NORWELL, Mass., Sept. 15, 2026 — The National Organization for Rare…
Read article
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), three of which…
Read article
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).…
Read article
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 —…
Read article
Dear Friends, Happy anniversary to us, the rare disease community. Forty years ago today marked a turning point for people living with rare diseases and their families. The Orphan Drug …
Continue reading “My Anniversary Wish for the Rare Disease Community”
Read moreBy Brian J. Lane Sunday morning. I slept in. It’s 8:30 or maybe 9:30, who the heck knows? It’s a Sunday after all. I roll over and wipe some drool …
Continue reading “A Husband’s View on How Motivated Moms Have a Hidden Extra Gear”
Read moreThe following commentary by NORD President and CEO Peter Saltonstall originally appeared in The Well. Rare diseases are, by definition, uncommon. For a disease to qualify as rare, it must …
Continue reading “Dear Congress: Don’t Leave Rare Disease Patients Behind”
Read moreMy journey with cholangiocarcinoma (also known as bile duct cancer) began when my mom was diagnosed with the same rare cancer and passed away in 2011. In 2018, I was …
Continue reading “Jan’s Story of Hope”
Read moreOne of the most popular sessions at NORD’s 2022 Rare Disease and Orphan Products Breakthrough Summit was the session, “Mental Health and Rare Cancers.” Attendees had the opportunity to gain …
Continue reading “Highlights from #NORDSummit Session: Mental Health and Rare Cancers”
Read moreThe National Organization for Rare Disorders (NORD) announces a request for applications for the implementation of up to four new patient registries on the IAMRARE platform. Funding is made available …
Continue reading “Request for Applications: New Patient Registries”
Read moreWith 100 days till Rare Disease Day 2023, organizations and individuals across the country join the National Organization for Rare Disorders (NORD) to help make a difference for rare disease patients …
Read more126 Organizations Urge Congress to Include Critical FDA Programs and Reforms in Year-End Spending Bill In a letter authored by NORD and signed by 126 organizations representing or treating patients …
Continue reading “Maybe Obscure to You, but Life-Changing for Millions of Americans”
Read morePlease complete this form to access the requested resource.
