Published July 12, 2022 by NORD
Many people with rare diseases require medical nutrition prescribed by a healthcare provider to prevent permanent disability and mortality, allow for normal growth in children and adults, or provide adequate …
Read morePublished December 20, 2021 by NORD
In November, NORD announced the launch of its Rare Disease Centers of Excellence program, which aims to improve medical care for people living with rare diseases. The program has ambitious …
Read morePublished September 28, 2021 by NORD
David Arons is the Chief Executive Officer of the National Brain Tumor Society (NBTS). He shares a passion for incorporating diversity, equity, and inclusion within the rare cancer and rare …
Continue reading “Head of the Herd: David Arons, National Brain Tumor Society”
Read morePublished September 3, 2021 by NORD
I have been a healthy person my whole life. I never drank alcohol or smoked, and I had a good diet. In 2004, I began to have some questionable numbers on blood work, but my primary doctor could never really tell what was going on. My …
Continue reading “Martin’s Fight Against Waldenstrom Macroglobulnemia”
Read morePublished May 27, 2021 by NORD
Quincy, MA and Danbury, CT, May 27, 2021—The National Organization for Rare Disorders (NORD®), the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced …
Continue reading “NORD Welcomes Edward Neilan, MD, PhD, as Chief Medical and Scientific Officer”
Read morePublished April 22, 2021 by NORD
Danbury, CT and Austin, TX – April 22, 2021 – CDISC and the National Organization for Rare Disorders (NORD®) have announced a partnership to develop global data standards for rare …
Continue reading “CDISC and NORD Partner to Develop Data Standards for Rare Diseases”
Read morePublished April 8, 2021 by NORD
For several years, the National Organization for Rare Disorders (NORD) has prioritized gene therapy education to advance knowledge and promote safe and effective clinical applications to reduce suffering from rare …
Continue reading “NORD Expands Gene Therapy Offerings Through New Online Resources”
Read morePublished March 25, 2021 by NORD
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 examine if laws and …
Read morePublished 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 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 …
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