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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

May 5, 2020

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

New Community Survey Findings from NORD Reveal Significant Impact of COVID-19 on Americans Living with Rare Diseases

Posted at May 5, 2020 02:46 pm by Laura Mullen

Washington, DC, May 5, 2020–Today, the National Organization for Rare Disorders (NORD®) released the findings of its recent survey on the critical issues and concerns the rare disease community is facing due to the COVID-19 pandemic. The COVID-19 Community Survey Report is published through RareInsights™,Read More

April 24, 2020

TOPIC: Featured News, Advocacy, COVID-19

NORD Joins 400+ Groups to Prevent Discrimination During COVID-19 Triaging

Posted at April 4, 2020 09:00 am by Laura Mullen

Between 25 and 30 million Americans have a rare disease, many of whom are disproportionately at risk of getting sick from COVID-19. According to the Centers for Disease Control and Prevention, in addition to older adults, people of any age who have serious underlying medical conditions like chronic lung disease or asthma, serious heart conditions,… Read More