Published October 1, 2026 by NORD
Over $145,000 in Funding Supports Innovative Studies Targeting Four Critically Underserved Conditions Quincy, Mass., Oct. 1, 2026 —The National Organization for Rare Disorders (NORD®), the leading national nonprofit serving more …
Continue reading “NORD Awards Seed Grants to Advance Breakthroughs in Rare Disease Research”
Read morePublished June 2, 2026 by NORD
Healthcare policies are most effective when they work for the most medically complex populations, including people living with rare diseases. The National Organization for Rare Disorders (NORD®) is concerned that the newly released CMS …
Read morePublished May 19, 2026 by NORD
H.46 makes Vermont the 34th state in the nation – including all states in New England – to give rare disease patients a formal voice in state government. Montpelier, VT, …
Continue reading “Vermont Governor Signs Rare Disease Advisory Council into Law”
Read morePublished February 23, 2026 by NORD
NORD Calls on Nation to “Show Your Stripes” on Global Rare Disease Day, Feb. 28 NORWELL, Mass., FEB. 23, 2026 – The National Organization for Rare Disorders (NORD®) is calling attention to rare diseases …
Continue reading “More Than 30 Million Americans Living with Rare Diseases”
Read morePublished February 9, 2026 by NORD
Annual state report card highlights progress and persistent gaps in access to care for 30 million Americans WASHINGTON, D.C., Feb. 9, 2026 — Access to care for Americans living with rare diseases …
Read morePublished December 4, 2025 by NORD
NORD report shows 63 FDA vouchers driving breakthroughs for 47 rare pediatric diseases, 43 with no prior treatments — unprecedented progress for children left behind WASHINGTON, Dec. 4, 2025 — …
Read morePublished June 30, 2025 by NORD
New council ensures thousands of Rhode Islanders living with rare diseases have a voice in state policy PROVIDENCE, R.I., June 30, 2025 — Rhode Island Gov. Daniel McKee has signed …
Continue reading “NORD Celebrates Rhode Island’s Historic Creation of Rare Disease Advisory Council”
Read morePublished May 14, 2025 by NORD
NORD’s advocacy helps Montana become 32nd state to create a dedicated council HELENA, MONT., May 14, 2025 — The National Organization for Rare Disorders (NORD®) celebrates Montana Gov. Greg Gianforte’s signing …
Read morePublished May 13, 2025 by NORD
New State Council Will Help Shape Health Policies for Arizonans Living with Rare Diseases PHOENIX, May 13, 2025 — The National Organization for Rare Disorders (NORD®) celebrates a significant milestone …
Continue reading “Arizona Becomes the 31st State With a Rare Disease Advisory Council”
Read morePublished February 10, 2025 by NORD
NORD offers comprehensive review on statewide practices related to screening sample retention, provides policy recommendations February 10, 2025, Washington, D.C. — The National Organization for Rare Disorders (NORD®) today published a …
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