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Archives for: April 16th, 2020

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…)

#raredisease like aHUS, it may feel as if you are alone, but there ar… https://t.co/Z2kWf9Ccdk
  • To ensure access, enable high-quality care, promote equity and protect #raredisease patients, NORD joins a coalitio… https://t.co/rCRlUpdgLX
  • The @guthyjacksonfdn presents a series of Therapeutic Breakout Sessions with key stakeholders to learn about new FD… https://t.co/EqX5UUPR6q