Published October 27, 2021 by NORD
October 27, 2021 – The National Institutes of Health, U.S. Food and Drug Administration, 10 pharmaceutical companies and five non-profit organizations have partnered to accelerate development of gene therapies for …
Read morePublished October 21, 2021 by NORD
Two days of insightful and engaging speakers, sessions, and networking at the most important event in rare disease saw record-breaking attendance October 21, 2021 – This week, the National Organization for Rare Disorders (NORD®) hosted the virtual Rare Diseases and Orphan Products …
Read morePublished September 29, 2021 by NORD
Washington, DC, September 29, 2021— Tomorrow, the rare disease community will celebrate the third annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer Coalition™, Rare Cancer Day is …
Continue reading “Rare Cancer Day 2021 Brings Together Rare Disease Community and Advocates”
Read morePublished September 23, 2021 by NORD
Washington, DC, September 23, 2021—The National Organization for Rare Disorders (NORD®), the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced the appointment of …
Continue reading “NORD Welcomes Aliza Fink, D.Sc. as Director of Research Programs”
Read morePublished September 22, 2021 by NORD
Research study is open to participants worldwide to advance understanding and treatments for TBRS, a mutation of DNMT3A, causing overgrowth, autism, intellectual disabilities, orthopedic concerns, cardiac issues, and a variety …
Read morePublished September 15, 2021 by NORD
TUCSON, Ariz. and WASHINGTON, September 15, 2021 — The Rare Disease Cures Accelerator-Data and Analytics Platform initiative (RDCA-DAP®) officially launched its next phase on Tuesday establishing itself as the leading platform to …
Continue reading “Rare Disease Innovation and Data Sharing Accelerated by New RDCA-DAP Program”
Read morePublished September 13, 2021 by NORD
The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the more than 25 million Americans with rare diseases, issued the following statement in response to upcoming …
Continue reading “NORD Statement on Proposed Changes to the Orphan Drug Tax Credit”
Read morePublished September 1, 2021 by NORD
TUCSON, Ariz. and WASHINGTON, September 1, 2021 — For two years, Critical Path Institute (C-Path), the National Organization for Rare Disorders (NORD) and the U.S. Food and Drug Administration (FDA) have joined …
Read morePublished August 27, 2021 by NORD
August 27, 2021 – Registration is now open for the NORD Rare Diseases and Orphan Products Breakthrough Summit®. The NORD Summit, one of the largest global events in rare disease, brings together experts …
Continue reading “Breakthrough Summit 2021: The Most Important Rare Disease Conference of the Year”
Read morePublished August 16, 2021 by NORD
Research study is open to participants worldwide to advance understanding and treatments for Metachromatic Leukodystrophy, a recessive genetic disorder that is characterized by the accumulation of fats (lipids) called sulfatides …
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