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 February 27, 2025 by NORD
Paramount to match funds donated to NORD in support of new film Novocaine QUINCY, Mass., Feb. 27, 2025 — The National Organization for Rare Disorders (NORD®) is teaming up with Paramount Pictures …
Continue reading “NORD, Paramount Pictures Join Forces to Raise Awareness of Rare Disease”
Read morePublished February 19, 2025 by NORD
Expanded Medicaid/CHIP Continuous Eligibility for Children, Step Therapy Reforms, andOut-of-Pocket Prescription Cost Protections Among 2024 State Improvements Feb. 19, 2025, Washington, D.C. — The National Organization for Rare Disorders (NORD®) today issued …
Read morePublished December 21, 2024 by NORD
For the last several years, the National Organization for Rare Disorders (NORD) has had the privilege of working in close collaboration with Members of Congress from both sides of the …
Read morePublished December 12, 2024 by NORD
QUINCY, Mass. Dec. 12, 2024 — The National Organization for Rare Disorders (NORD®) has named Tracey Sikora, Vice President of Research & Clinical Programs. “One of the main hurdles in …
Read morePublished December 9, 2024 by NORD
QUINCY, Mass., December 9, 2024 – The National Organization for Rare Disorders (NORD) has named Kelly Esperias, EdD, MBA, CFRE, Chief Strategy & Operations Officer. Esperias, who previously served as …
Read morePublished 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 …
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