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October 15, 2020

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

NORD Issues Report on Ensuring Access to Telehealth for Rare Diseases

Posted at October 10, 2020 06:38 pm by Jennifer Huron

For those in the rare community, one of the few positives that have come from the global COVID-19 pandemic has been the wider availability of telehealth services. Through surveys, virtual discussion groups and direct advocacy efforts, NORD has continued to track rare patients’ and caregivers’ use of and experience with telehealth. The findings from NORD’s work are gathered in… Read More

October 5, 2020

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

NORD and FDA Co-Host Public Listening Session, Focusing on COVID-19 and Rare Diseases

Posted at October 10, 2020 09:32 am by Laura Mullen

The COVID-19 pandemic has caused great fears around drug shortages, the demand for personal protective equipment (PPE) and the status of clinical trial research for rare diseases. On September 16, NORD heard from our rare disease community and brought their questions directly… Read More

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