Published February 7, 2023 by NORD
Patient access to care and services improved across key policy areas in 2022, but challenges remain for the rare disease community February 7, 2023, Washington, D.C. – The National …
Read morePublished January 31, 2023 by NORD
By Karin Hoelzer Rare disease patients and caregivers often ask me whether they should really engage in health policy. Is it really worth the trouble? In short, the answer is …
Read morePublished January 30, 2023 by NORD
It is the start of a new year, and we look forward to continuing to work you, our amazing advocates, to ensure rare disease voices are heard at all levels …
Continue reading “The Year Ahead: NORD’s 2023 Advocacy Agenda”
Read morePublished January 26, 2023 by NORD
Alone we are Rare. Together we are strong. This motto exemplifies the mindset of the rare disease community and is as true today as it was 40 years ago. The …
Read morePublished January 4, 2023 by NORD
The year 2022 marked several significant policy victories for people living with rare diseases, thanks to the tireless dedication of NORD Rare Action Network advocates who worked to ensure lawmakers …
Continue reading “5 Ways Rare Disease Advocates Made a Difference in 2022”
Read morePublished December 23, 2022 by NORD
As part of H.R. 2617, Congress today delivered several crucial programs and reforms that are important to the rare disease community — measures that NORD and the rare community fought …
Continue reading “Congress’ Year-End Legislative Package Delivers for the Rare Community”
Read morePublished October 13, 2022 by NORD
New initiative seeks to identify gaps experienced by patients and caregivers in underrepresented communities along their rare disease diagnosis and treatment journey Washington, DC, October 13, 2022— Today, the Rare Disease …
Read morePublished October 6, 2022 by NORD
NORD’s Hurricane Emergency Relief Fund provides limited financial assistance to those with a rare disease who are victims of natural disasters. Emergency relief funds may be requested once per household/per …
Continue reading “Help for rare disease patients impacted by recent 2022 hurricanes”
Read morePublished September 30, 2022 by NORD
September 30, 2022, Washington, DC – Following the passage of H.R 6833, Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), issued the following statement: …
Continue reading “NORD Statement on User Fee Reauthorization and Continuing Resolution”
Read morePublished September 28, 2022 by NORD
Washington, DC, September 28, 2022— This week, the rare disease community will celebrate the fourth annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer …
Continue reading “Rare Cancer Day 2022 Showcases Critical Community Awareness and Advocacy”
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