Published 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 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 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 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 February 14, 2025 by NORD
There are several proposed policy changes occurring across government entities, many of which have the potential to impact the rare disease community. At the National Organization for Rare Disorders (NORD®), …
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 …
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 …
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