Published October 21, 2024 by NORD
Data will be used to help improve policy, access, resources WASHINGTON, DC, October 21, 2024 – Today, the National Organization for Rare Disorders (NORD) introduced the Living Rare Study, a …
Read morePublished September 30, 2024 by NORD
Council will advise and advocate on the needs of California’s rare disease community SACRAMENTO, CA, SEPTEMBER 30, 2024 — California Governor Gavin Newsom signed into law AB 2613, legislation that …
Read morePublished May 10, 2024 by NORD
The National Organization for Rare Disorders (NORD) announced the launch of two Canadian patient registries within its IAMRARE® Program, in partnership with the Children’s Hospital of Eastern Ontario (CHEO) Research …
Continue reading “NORD Launches First Canadian Patient Registries on Its IAMRARE Platform”
Read morePublished May 1, 2024 by NORD
QUINCY, MA, May 1, 2024—The National Organization for Rare Disorders (NORD) announced today that Pamela K. Gavin has been named CEO effective immediately. She succeeds Peter L. Saltonstall who announces …
Read morePublished April 22, 2024 by NORD
The National Organization for Rare Disorders (NORD) will honor a distinguished group of individuals and industry leaders for their contributions to help improve the lives of more than 30 million …
Read morePublished October 16, 2023 by NORD
Series available in English and Spanish – Created in partnership with the FDA and Critical Path Institute Today, the National Organization for Rare Disorders (NORD) launched a new education series …
Read morePublished July 26, 2023 by NORD
Delaware is the 27th state to establish a Rare Disease Advisory Council to raise awareness and inform state health policies. July 26, 2023, Dover, DE – Today, patients and families in …
Continue reading “Delaware Enacts Law to Address Needs of Rare Disease Patients and Families”
Read morePublished July 7, 2023 by NORD
Today, the National Organization for Rare Disorders (NORD) and the APS Type 1 Foundation, a NORD member organization, announced the awarding of a $50,000 grant for research into this rare …
Read morePublished June 30, 2023 by NORD
Today, the Centers for Medicare and Medicaid Services (CMS) finalized a key component of the Inflation Reduction Act’s Medicare Drug Price Negotiation Program (MDPNP). Unfortunately, today’s guidance threatens vital innovation …
Read morePublished June 27, 2023 by NORD
WASHINGTON, DC, and ALBANY, N.Y., June 27, 2023 – The Galactosemia Foundation and the National Organization for Rare Disorders (NORD)® today announced they have jointly published the galactosemia community’s first …
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