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July 23, 2020

TOPIC: Press Releases, Featured News, COVID-19

NORD Awards COVID-19 Rapid Response Seed Grants to Rare Disease Patient Organizations Impacted by the Pandemic

Posted at July 7, 2020 10:02 am by Laura Mullen

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 advocacy groups to access capacity-buildingRead More

July 6, 2020

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

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

Posted at July 7, 2020 04:42 pm 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

May 21, 2020

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

NORD Supports Rare Disease Nonprofits Impacted by COVID-19 with New Rapid Response Leadership Series

Posted at May 5, 2020 10:04 am by Laura Mullen

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 facing challenges brought on by the current pandemic.

NORD recently surveyed the rare disease community, collecting feedback from nearly 800 patients and caregivers on the… Read More

May 12, 2020

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

In Support of Rare Disease Patients Impacted by COVID-19, NORD Launches Premium and Limited Medical Relief Program

Posted at May 5, 2020 09:19 am by Laura Mullen

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 Relief Program to provide vital support to members of the rare disease community affected by the COVID-19 pandemic. The program will assist those with a… Read More

May 7, 2020

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

Infographic Illustrates Effects of the COVID-19 Pandemic on Rare Disease Patients and Families

Posted at May 5, 2020 02:42 pm by Laura Mullen

NORD’s recently released COVID-19 Community Survey Report reveals the far-reaching impact the pandemic is having on rare patients and families. 772 participants responded to the survey conducted by NORD’s research team from April 1 through April 8, 2020. Respondents represent 49 of 50 states and Washington, DC, and multiple disease categories, including genetic conditions, primary… Read More