Published November 6, 2024 by NORD
For 41 years, as a nonpartisan nonprofit organization, the National Organization for Rare Disorders (NORD) has collaborated with administrations and policymakers at every level to address the urgent needs of …
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 September 24, 2024 by NORD
September 24, 2024 The National Organization for Rare Disorders (NORD) applauds the House of Representatives for passing the Give Kids a Chance Act, a major step toward providing more opportunities …
Read morePublished September 18, 2024 by NORD
WASHINGTON, D.C., September 18, 2024 — Today, members of the House Energy & Commerce Committee unanimously voted to advance out of Committee the Give Kids a Chance Act (H.R. 3433), …
Read morePublished July 23, 2024 by NORD
The National Organization for Rare Disorders (NORD) released a new report showing the undeniable effectiveness of the Rare Pediatric Disease Priority Review Voucher (RPD PRV) program, designed to incentivize the …
Continue reading “Congress: Reauthorize the Rare Pediatric Disease Priority Review Voucher Program”
Read morePublished May 21, 2024 by NORD
NORD and its Rare Action Network Advocates commend Vermont’s elected officials for prioritizing the needs of 1 in 10 Vermonters living with rare diseases; new law helps patients access the …
Read morePublished May 16, 2024 by NORD
WASHINGTON, D.C., May 16, 2024, Today, the House of Representatives’ Energy and Commerce Health Subcommittee voted to advance several bipartisan bills important to the rare disease community, two of which …
Read morePublished April 29, 2024 by NORD
By Christine M. Photo by Rick Guidotti April is the month that marks two areas of my life that have had a dramatic impact on me: my search for answers …
Continue reading “April Showers Bring May Flowers: Christine’s National Volunteer Month Story”
Read morePublished April 24, 2024 by NORD
SACRAMENTO, CA, April 24, 2024—Today, California is one step closer to establishing a Rare Disease Advisory Council (RDAC) to help the 1-in-10 Californians living with rare disease access critical care …
Read morePublished April 19, 2024 by NORD
By Bill S. Before becoming a NORD Running for Rare coach, I was a runner for over 30 years chasing my own goals, and a coach for 10 years helping other …
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