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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

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 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

April 20, 2020

TOPIC: Featured News, Advocacy, COVID-19

Update on NORD’s Recent Advocacy Work on COVID-19 for the Rare Community

Posted at April 4, 2020 11:15 am by Laura Mullen

In this time of crisis and uncertainty, NORD’s policy team has been working to pursue policies at the federal and state levels to address COVID-19 related concerns critical to the rare disease community. 

Protecting Access to Necessary Medical Treatment During the Pandemic

Social distancing is critical for slowing the spread of the coronavirus. But, for many rare… Read More

April 16, 2020

TOPIC: Featured News, Medical

NORD and FMC’s Gene Therapy Survey: A Call to Action for Healthcare Professional Education

Posted at April 4, 2020 08:46 am by Laura Mullen

The results of a survey on gene therapy conducted by NORD and Frontline Medical Communications (FMC) among physicians and other healthcare professionals were recently announced. The responses indicated significant knowledge gaps among providers across 14 specialty areas.

For instance:

  • 63% of respondents were unaware of current FDA-approved gene therapies.
  • Respondents reported a low level of comfort in discussing gene therapy… Read More