Published March 15, 2023 by NORD
By Peter L. Saltonstall and Tara Zier For years, famed singer Céline Dion dealt with mysterious symptoms of severe muscle spasms and stiffening in her limbs that hampered her ability …
Continue reading “The Celine Effect: Stiff Person Syndrome Gains a Powerful Voice”
Read morePublished March 2, 2023 by NORD
By Debbie Drell I’ve been a part of thousands of conference calls and virtual meetings during the course of my career. But while the details of many of those conversations …
Continue reading “NORD Commemorates Five Years of FDA Listening Sessions”
Read morePublished March 1, 2023 by NORD
Three years ago, Jeffrey Kramer made a promise to his daughter as she bravely battled the rare bone cancer Chondrosarcoma. Today, he is taking an important step in honoring that …
Continue reading “New Registry Creates a Platform for Sharing Information About Chondrosarcoma”
Read morePublished 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 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 November 21, 2022 by NORD
One of the most popular sessions at NORD’s 2022 Rare Disease and Orphan Products Breakthrough Summit was the session, “Mental Health and Rare Cancers.” Attendees had the opportunity to gain …
Continue reading “Highlights from #NORDSummit Session: Mental Health and Rare Cancers”
Read morePublished November 16, 2022 by NORD
With 100 days till Rare Disease Day 2023, organizations and individuals across the country join the National Organization for Rare Disorders (NORD) to help make a difference for rare disease patients …
Read morePublished November 15, 2022 by NORD
126 Organizations Urge Congress to Include Critical FDA Programs and Reforms in Year-End Spending Bill In a letter authored by NORD and signed by 126 organizations representing or treating patients …
Continue reading “Maybe Obscure to You, but Life-Changing for Millions of Americans”
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 August 12, 2022 by NORD
Washington, DC, August 12, 2022 – Following the passage of the Inflation Reduction Act, Peter L. Saltonstall, President and CEO, the National Organization for Rare Disorders (NORD), issued the following …
Continue reading “NORD Statement on Passage of the Inflation Reduction Act”
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