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May 19, 2020

TOPIC: Press Releases, Featured News, Research

NORD Awards Eleven New Grants in Eight Disease States for Rare Disease Research

Posted at May 5, 2020 09:00 am by Laura Mullen

Washington, DC, May 19, 2020The National Organization for Rare Disorders (NORD®) has announced new awards through its Rare Disease Research Grant Program, which provides funding to qualified researchers for translational or clinical studies related to the development of new diagnostics or treatments for rare disease. Since the program’s launch in 1989, NORD grants have led… Read More

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 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 21, 2020

TOPIC: Featured News, Medical, Research

NORD’s Director of Research Programs Publishes Article on Rare Disease Research in the 2020 Rare Neurological Disease Special Report

Posted at April 4, 2020 03:03 pm by Laura Mullen

The National Organization for Rare Disorders (NORD®) is excited to spotlight an article written by NORD’s Director of Research, Vanessa Boulanger, MSc, published in the 2020 Rare Neurological Disease Special Report. The feature, “Now Is The Time For Research On Rare Diseases,” details the importance of natural history studies, the role of patients and caregivers as… Read More