Written by Rohan Narayanan on May 11, 2022
Post-Transplant Lymphoproliferative Disorder (PTLD) is a rare cancer related to organ and stem cell transplants, as well as Epstein bar disease. There is no nonprofit organization dedicated to this community and the last known gathering involved less than a dozen patients and caregivers, pre-pandemic. When NORD learned of interest… Read More
Written by Jennifer Huron on March 25, 2021
Washington, DC, March 25, 2021—The National Organization for Rare Disorders (NORD®) today announced the findings of a new study that details the number of orphan products, generics and biosimilars available to treat rare diseases. NORD commissioned Avalere to conduct the analysis to… Read More
Written by Jennifer Huron on March 4, 2021
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 for just 11% of medical invoice spending in the United States, and 79% of all orphan… Read More
Written by Valaree DonFrancesco on January 26, 2021
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… Read More
Written by Valaree DonFrancesco on January 22, 2021
The National Organization for Rare Disorders (NORD®) looks forward to working with Dr. Janet Woodcock as Acting Commissioner…
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