Published September 10, 2020 by NORD
Washington, DC, September 10, 2020–At a time when it is vitally important for the rare disease community to come together, the National Organization for Rare Disorders (NORD®) has announced a program of …
Read morePublished September 1, 2020 by NORD
A Personal Reflection from Stephanie Cozine, Delaware Rare Action Network Ambassador Did you know that your baby is screened for different diseases depending on which state you live in? That …
Continue reading “September is Newborn Screening Awareness Month”
Read morePublished August 25, 2020 by NORD
“Since 1906, FDA’s dedicated career employees have worked tirelessly to ensure that Americans have access to the safest supply of products we rely on every day, including food, drugs and …
Continue reading “NORD CEO Affirms Science Should Guide FDA’s Work”
Read morePublished August 17, 2020 by NORD
The COVID-19 pandemic has had a huge impact on the rare disease community. NORD has heard from countless patients over the last few months about how this crisis has added to the …
Continue reading “NORD Releases Four Guiding Principles on Telehealth Issues”
Read morePublished July 23, 2020 by NORD
Washington, DC, July 23, 2020—In response to the unprecedented challenges rare disease nonprofit organizations are currently facing, the National Organization for Rare Disorders (NORD®) today announced nineteen seed grant recipients of its COVID-19 Rapid Response Leadership Series program. The awards will assist patient …
Read morePublished July 6, 2020 by NORD
During the pandemic, many rare disease patients have been diligent about staying home as social distancing continues to be critical to minimize the spread of the coronavirus; as a result, …
Continue reading “The NORD Policy Team Wants to Hear About Your COVID-19 Telehealth Experience”
Read morePublished June 22, 2020 by NORD
The newest addition to the NORD Rare Disease Video Library is a set of four videos on genome editing, a promising approach to treatment for many people affected by …
Continue reading “NORD’s New Genome Editing Videos Address Patient/Caregiver Questions”
Read morePublished June 11, 2020 by NORD
We are at a pivotal time in rare disease, one that requires new approaches and fresh perspectives in order to achieve real progress. Given the impact of the COVID-19 pandemic …
Read morePublished May 21, 2020 by NORD
Washington, DC, May 21, 2020—The National Organization for Rare Disorders (NORD®) today launched the COVID-19 Rapid Response Leadership Series, a program providing resources to support rare disease nonprofit groups in …
Read morePublished May 12, 2020 by NORD
Washington, DC, May 12, 2020— United with more than 25 million Americans living with rare diseases, the National Organization for Rare Disorders (NORD®) today launched its COVID-19 Premium & Medical …
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