Published June 5, 2025 by NORD
QUINCY, Mass., June 5, 2025 – The National Organization for Rare Disorders (NORD®) proudly announces a major milestone: for the first time, patient data collected through the NORD IAMRARE® patient …
Read morePublished April 8, 2025 by NORD
The FDA approval of the first treatment for Friedreich’s Ataxia (FA) on Rare Disease Day in 2023 marked a significant milestone for the estimated 5,000 people in the U.S. and …
Continue reading “Guest Blog: The Power of Patient Advocacy in Drug Development”
Read morePublished March 21, 2025 by NORD
Danbury, CT, March 21, 2025 – The National Organization for Rare Disorders (NORD®) launched NORD® Claim Your Care to help those living with rare diseases navigate a complicated health insurance …
Continue reading “National Organization for Rare Disorders (NORD) Launches NORD Claim Your Care”
Read morePublished July 22, 2024 by NORD
By Sarah Cortell Vandersypen, CFRE, Executive Director, United MSD Foundation On May 9, 2016, Willow Cannan, the two-year-old daughter of Tom Cannan and Amber Olsen, was diagnosed with a terminal …
Continue reading “Guest Blog: One Mother’s Mission Turns Into a Global Movement for a Cure for MSD”
Read morePublished March 28, 2023 by NORD
The Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP®) is an integrated database and analytics hub developed by Critical Path Institute (C-Path) and NORD through a collaborative grant from the …
Read morePublished August 30, 2022 by NORD
Annie Achee is the President and Community Education/Research Liaison of the National Leiomyosarcoma Foundation (NLMSF). Leiomyosarcoma is a rare sarcoma (cancer) that originates in smooth tissue (including fat, muscle, nerves, …
Continue reading “Head of the Herd: Annie Achee, National Leiomyosarcoma Foundation (NLMSF)”
Read morePublished August 22, 2022 by NORD
On June 29, 2022, NORD hosted the Living Rare, Living Stronger Patient and Family Forum live in Cleveland, Ohio and simultaneously to the rare disease community virtually across the globe. …
Continue reading “2022 Living Rare Forum Q&A”
Read morePublished August 18, 2022 by NORD
NORD’s annual rare disease conference on October 17 and 18 in Washington, DC will showcase two days of insightful speakers, discussions, and in-person connection WASHINGTON, DC, August 18, 2022 – The …
Read morePublished August 18, 2022 by NORD
August is national “Make a Will Month,” a critical moment for planned giving and making a lasting impact. Every adult – regardless of age – should take the time to …
Continue reading “Solidify Your Legacy for Make a Will Month”
Read morePublished August 1, 2022 by NORD
A historic, virtual meeting of the galactosemia community, FDA, and drug development leaders will be hosted on Thursday, September 1st Galactosemia is a rare, hereditary disorder that affects the body’s …
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