Published February 18, 2022 by NORD
The following is a guest post from Tamar Thompson, Head of Corporate Affairs, Alexion. Each year, on the last day of February, Alexion joins together with all those in the …
Continue reading “Rare Disease Day 2022: Advancing the Conversation Around Health Equity”
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 26, 2021 by NORD
PharmaBoardroom, an international pharmaceutical industry media outlet providing industry trends, news and reports geared to senior professionals, recently interviewed Pamela Gavin on the importance of health equity and what NORD …
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 December 16, 2020 by NORD
As a 2020 scholarship recipient, I was able to attend the NORD Rare Diseases and Orphan Products and Breakthrough Summit in October and to hear from inspiring patients, hard-working medical …
Read morePublished November 2, 2020 by NORD
[carousel id=”48517″] One of the most important gatherings of the Krabbe disease community occurred in collaboration with the US Food and Drug Administration (FDA) on October 29, and it was 100% virtual with live, interactive components. FDA regulators, academic …
Continue reading “NORD and Patient Advocacy Groups Host an EL-PFDD Meeting on Krabbe Disease”
Read morePublished October 21, 2020 by NORD
TUCSON, Ariz. and WASHINGTON, D.C. October 21, 2020 — The Critical Path Institute (C-Path) and the National Organization for Rare Disorders (NORD®) hosted the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) 2020 …
Continue reading “RDCA-DAP First Year Milestones Highlighted at Virtual Workshop”
Read morePublished October 14, 2020 by NORD
NORD and the Critical Path Institute (C-Path) are collaborating on a new initiative, the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP), bringing together data from different sources, making it available for …
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