Published November 18, 2021 by NORD
Reading, PA, November 18, 2021—Today, the Gorlin Syndrome Alliance (GSA) and the National Organization for Rare Disorders (NORD)® launched the largest-ever study to research Gorlin syndrome, a rare disease that …
Read morePublished November 1, 2021 by NORD
Letter to Governors Stresses Urgency of Expiring Licensure Waivers and its Impact on Patient Access to Care Washington, DC – November 1, 2021 – Today, more than 230 organizations sent …
Read morePublished October 29, 2021 by NORD
The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to newly introduced draft …
Continue reading “NORD Response to New Draft of the Build Back Better Act”
Read morePublished 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”
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