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May 13, 2020

TOPIC: Featured News, Patients & Members, Research, Advocacy

NORD to Host an Externally-led Patient-Focused Drug Development Virtual Meeting on Krabbe Disease, Thursday, October 29

Posted at May 5, 2020 02:06 pm by Laura Mullen

NORD, KrabbeConnect and Partners for Krabbe Research invite you to register for an externally-led Patient-Focused Drug Development (EL-PFDD) virtual meeting on Krabbe disease, taking place Thursday, October 29, 12:30-4:30pm ET. Patients and caregivers impacted by Krabbe disease who are interested in participating at the virtual meeting as panelists should complete this 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 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