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Archives for: November 24th, 2020

NORD and Partners Publish Abstract Based on Web-Based Hemophilia A Educational Initiative for Patients, Caregivers and HCPs

Written by Katie Kowalski on November 24, 2020

The National Organization for Rare Disorders (NORD®), in partnership with PlatformQ Health, the Hemophilia Federation of America and the National Hemophilia Foundation, is pleased to announce the publication of an outcomes-evaluation abstract in conjunction with the 62nd American Society of Hematology (ASH) Annual Meeting. Assessing Patient and Provider Perspectives, Clinical… Read More

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

Written by Laura Mullen on April 16, 2020

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… Read More

Even “Well Known” Rare Diseases Pose Diagnosis Problems

Written by Mary Dunkle on September 4, 2013

Even though Gaucher disease is one of the better known rare diseases and diagnostic testing is available, some patients still go for 10 years or longer without getting an accurate diagnosis after symptoms first appear. (more…)