Published March 4, 2021 by NORD
Washington, DC, March 4, 2021—As US policymakers consider options to address rising health care costs while still meeting the needs of patients, a new report from IQVIA has found that rare diseases account …
Read morePublished February 25, 2021 by NORD
The ALS Association’s podcast, Connecting ALS, interviewed NORD Director of Membership Debbie Drell for a special Rare Disease Day episode, streaming now. The conversation touched on the origins of Rare …
Continue reading “NORD’s Debbie Drell Interviewed on “Connecting ALS” Podcast for Rare Disease Day”
Read morePublished February 23, 2021 by NORD
Washington, DC, February 23, 2021 — Today the National Organization for Rare Disorders (NORD®) announced this year’s Rare Impact Award honorees. These outstanding individuals, organizations and industry innovators will be …
Read morePublished February 22, 2021 by NORD
Tristan Lee, a 37-year-old Pennsylvania man who has lived with sickle cell disease since birth, is a patient advocate with Sickle Cell Disease Association of America, a NORD member organization. …
Read morePublished February 10, 2021 by NORD
In “Pandemic Won’t Stop Rare Disease Day on Feb. 28,” an article by BioNews Service’s Mary Chapman that ran on 2.10 and is being picked up by 25+ of BioNews’ …
Continue reading “NORD Featured in BioNews Service Article on Rare Disease Day Happenings”
Read morePublished February 2, 2021 by NORD
In its February 2021 issue, PharmaVOICE features NORD in its Rare Disease Showcase column. In “Rare Disease: Tackling the Barriers to Rare Disease Treatment,” NORD’s Undiagnosed Patients Registry and the …
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Read morePublished January 28, 2021 by NORD
Washington, DC, January 28, 2021— Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are millions in the United States and around the globe …
Read morePublished January 27, 2021 by NORD
Washington, DC, January 27, 2021—Today, the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™) published the 6th Edition of the State Report Card, the annual report rating each state and Washington, DC on the …
Read morePublished January 26, 2021 by NORD
Washington, DC, January 26, 2021—In an effort to provide clear, useful, authoritative information to rare disease patients and caregivers on the COVID-19 vaccines, on January 15 the National Organization for Rare Disorders (NORD®), along with The ALS Association, Cystic Fibrosis Foundation and Muscular …
Read morePublished December 17, 2020 by NORD
In a 12.16.2020 article from STAT on how shortages of protective gear pose a continued threat to some rare disease patients, NORD’s COVID-19 Community Survey Report is highlighted and NE …
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