Published 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 24, 2020 by NORD
A Note from NORD: In May, NORD was approached by the Oncology Center of Excellence (OCE) at the US Food and Drug Administration (FDA) to collaborate on a new initiative …
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 19, 2020 by NORD
At the head of the herd is… Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America Beverley advocates for those living with… sickle cell disease. How …
Read morePublished June 12, 2020 by NORD
I was diagnosed with toxic acute progressive leukoencephalopathy, a rare brain disease that took me from a high functioning and able-bodied individual to locked in syndrome, in six months. This …
Continue reading “Rare Reflections: Jacob’s Story”
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 June 3, 2020 by NORD
At this pivotal time, it is our duty as an organization and as global citizens to broadcast our support of people who have been systemically discriminated against, underserved and underrepresented …
Read morePublished June 2, 2020 by NORD
What is a registry and why are they so important to the rare disease community? Together, NORD and the Critical Path Institute (C-Path) created this video to explain the value …
Continue reading “New video from NORD and C-Path addresses the question: “What is a Registry?””
Read morePublished May 22, 2020 by NORD
At the head of the herd is… Emile Najm, Chief Executive Officer, KAT6A Foundation Emile most frequently checks his… Facebook account Emile advocates for those living with… A rare syndrome …
Continue reading “Head of the Herd: Emile Najm, KAT6A Foundation”
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 …
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