Published June 18, 2026 by NORD
Ben Wilson Father of Gabe, who lives with Bloom syndrome Lead Global Ambassador for the Bloom Syndrome Association Fatherhood often brings pride and hope, but a rare disease diagnosis can …
Continue reading “Rare Dad, Rare Hero: Ben Wilson”
Read morePublished June 18, 2026 by NORD
D. Rolf Hill Father of three girls: Sam, Polly, and Rebecca Advocate for the Friedreich’s Ataxia Research Alliance (FARA) This Father’s Day, NORD recognizes the fathers whose strength, advocacy, and …
Continue reading “Rare Dad, Rare Hero: D. Rolf Hill”
Read morePublished May 22, 2026 by NORD
Congress is currently considering the Access to Genetic Counselor Services Act (H.R. 6280/S. 3607), a bipartisan piece of legislation that would recognize genetic counselors as Medicare providers, allowing them to …
Continue reading “Access to Answers — Bridging the Gap to Genetic Expertise”
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 May 12, 2026 by NORD
Provided by Michael Beard, Vice President of Federal and Global Public Policy The National Organization for Rare Disorders (NORD) recognizes that the departure of the FDA Commissioner is a pivotal …
Continue reading “NORD Statement on FDA Leadership Change”
Read morePublished May 8, 2026 by NORD
Rebecca Bialas, MD Mom to two children with PLGD-1 Co-founder and Chair, Plasminogen Deficiency Foundation This month, NORD is proud to spotlight a few incredible “Moms on a Mission” across …
Continue reading “Moms on a Mission: Rebecca Bialas, MD”
Read morePublished February 24, 2026 by NORD
NORD is encouraged by efforts to strengthen and clarify regulatory tools that advance rare disease treatments. For conditions with extremely small patient populations, where traditional clinical trials are difficult to …
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 18, 2025 by NORD
The Senate’s failure to advance the Give Kids a Chance Act through unanimous consent is deeply disappointing. For more than a year, thousands of rare disease advocates have engaged lawmakers …
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