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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 28, 2020

TOPIC: Featured News, Patients & Members, Advocacy

Historic “Voice of the Patient” Report on Pyruvate Kinase Deficiency Now Available on FDA Site

Posted at April 4, 2020 08:59 am by Laura Mullen

“…As we pull into the hospital, she starts screaming that she doesn’t want to be there, and she wants to be home… No matter how much her doctors want to make her feel better, and she’s also three, so it’s hard to explain to her that this will make you feel better. All she knows is I’m… Read More

April 23, 2020

TOPIC: Featured News, Patients & Members, Events

The 2020 Living Rare, Living Stronger Forum Will Now Be Presented As A Virtual Event

Posted at April 4, 2020 10:30 am by Valaree DonFrancesco

The current COVID-19 pandemic necessitates a new approach to many aspects of life—particularly those that involve gathering together. The health and well-being of people living with rare diseases, their loved ones and those working to improve their lives are always top priorities at NORD.

With that in mind, we have made the decision to move from an in-person format to… Read More

April 15, 2020

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

NORD Launches Financial Assistance Program for Rare Disease Community Members Impacted by COVID-19

Posted at April 4, 2020 10:05 am by Laura Mullen

Washington, DC, April 15, 2020— At this time of crisis and with the health, safety and well-being of patients and caregivers as its top priorities, the National Organization for Rare Disorders (NORD®) today launched its COVID-19 Critical Relief Program to provide much-needed assistance to members of the rare community affected by the COVID-19 pandemic. The program provides… Read More

March 23, 2020

TOPIC: Featured News, Patients & Members, Events

NORD Member VHL Alliance Held Jeffersonian Dinner in Early March

Posted at March 3, 2020 08:00 am by Laura Mullen

Editor’s Note: The VHL Alliance’s Jeffersonian Dinner described below took place in early March. As we now practice social distancing in light of COVID-19, in-person events of this nature should not currently be taking place. However, the Jeffersonian Dinner presents an interesting kind of event for non-profits to consider for the future when such gatherings are again a possibility.

 

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