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June 22, 2020

TOPIC: Featured News, Medical, Patients & Members

NORD’s New Genome Editing Videos Address Patient/Caregiver Questions

Posted at June 6, 2020 08:31 am by Laura Mullen

 

The newest addition to the NORD Rare Disease Video Library is a set of four videos on genome editing, a promising approach to treatment for many people affected by rare diseases. The videos address questions shared with NORD by our members and social media followers.

These short, animated videos answer basic questions such as “What is genome editing?”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 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

April 2, 2020

TOPIC: Featured News, Medical

Neurology Reviews and NORD Publish Annual Rare Neurological Disease Special Report

Posted at April 4, 2020 02:10 pm by Laura Mullen

Parsipanny, NJ – Frontline Medical Communications (FMC) and the National Organization for Rare Disorders (NORD)® this week announced the release of the 6th annual Rare Neurological Disease Special Report. As the largest Rare Neurological Disease Special Report published to-date, this year’s issue features a unifying theme of the critical nature of multi-national, real-time collaboration that bolsters the… Read More

March 20, 2020

TOPIC: Featured News, Medical, Patients & Members, Industry, COVID-19

COVID-19 Resources for Non-profit Leaders and the Community

Posted at March 3, 2020 09:32 am by Valaree DonFrancesco

The health and safety of those with rare diseases and their caregivers are always our top priorities at the National Organization for Rare Disorders (NORD). We know our members are working tirelessly to support their communities during this global crisis. Rare disease organizations have felt the impact of the coronavirus pandemic on all elements of our work including mission-critical… Read More