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July 6, 2020

TOPIC: Featured News, Patients & Members, COVID-19

The NORD Policy Team Wants to Hear About Your COVID-19 Telehealth Experience

Posted by Laura Mullen

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, many patients have switched to receiving ongoing care through telehealth. Telehealth is generally described as a virtual communication used to deliver care outside of a typical or traditional health… Read More

June 26, 2020

TOPIC: Featured News

NORD Issues Statement on Recently Introduced “Promising Pathway Act”

Posted by Laura Mullen

NORD is deeply concerned about the “Promising Pathway Act” recently introduced in both the Senate and the House. Contrary to the stated goal of giving patients with serious and life-threatening diseases a “chance at receiving meaningful treatments,” this legislation, by its own terms, would lower FDA’s approval standards, exposing patients to unsafe and ineffective medicines. Rare disease patients deserve… Read More

June 24, 2020

TOPIC: Featured News, Patients & Members

FDA Oncology Center of Excellence Listening Session with NORD: A Patient Perspective

Posted by Laura Mullen

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 to help enhance communication revolving around the conduct of clinical trials for rare cancer drug development during the COVID-19 pandemic.  

Earlier this month, NORD, NORD’s… Read More

June 22, 2020

TOPIC: Featured News, #NORDintheNews

The Motley Fool Chooses NORD as One of Three Nonprofits Worthy of Donations

Posted by Laura Mullen


Founded in 1993 by brothers Tom and David Gardner, The Motley Fool helps millions of people attain financial freedom through their website, podcasts, books, newspaper column, radio show, and premium investing services. On June 20, a Motley Fool article on choosing nonprofits worth donating to featured NORD, along with the American Cancer Society and the Healthwell Foundation.

Some highlights… Read More

June 22, 2020

TOPIC: Press Releases, Featured News, Research

NORD’s Jayne Holtzer Rare Disease Research Grants Program Continues Its Commitment to Rare Disease Research with New Funding Opportunities

Posted by Valaree DonFrancesco

Washington, DC, June 22, 2020 – The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, today announced the availability of three new funding opportunities to support the study of two rare diseases. The initial application deadline is August 25, 2020.

NORD’s Jayne Holtzer Rare Disease Research Grants Program… Read More