Published September 15, 2023 by NORD
The announcement by our friend and fellow rare advocate Yann Le Cam that he will step down in March 2024 from the role of CEO of EURORDIS provides an opportunity …
Continue reading “Statement from NORD CEO on Announcement by Yann Le Cam”
Read morePublished May 12, 2023 by NORD
On this Mother’s Day, NORD would like to recognize the rare disease “Mom” who 40 years ago, brought us all together to where we are today. Abbey Meyers is the …
Continue reading “Recognizing Abbey Meyers, NORD Founder and Mother of a Movement”
Read morePublished May 3, 2023 by NORD
More than Half of U.S. States Now Solicit Input of State Rare Disease Advisory Councils to Inform Local Health Policies May 3, 2023, Annapolis, MD – Today, patients and families in …
Read morePublished 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 …
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