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Archives for: April 8th, 2021

NORD Expands Gene Therapy Offerings Through New Online Resources

Written by Lisa Sencen on April 8, 2021

For several years, the National Organization for Rare Disorders (NORD) has prioritized gene therapy education to advance knowledge and promote safe and effective clinical applications to reduce suffering from rare conditions. With this goal in mind, NORD is dedicated to producing a variety of educational resources for patients, caregivers, health… Read More

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

Written by Valaree DonFrancesco 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

McCarthy Story in Honor of Rare Disease Day

Written by Lisa Sencen on February 12, 2019

The following story was submitted by Lindsey McCarthy in honor of Rare Disease Day. In this story, Lindsey shares her family’s journey of receiving a diagnosis for their son, James, of a CNTNAP1 mutation. Read on to learn how the McCarthy’s have worked to find other families who… Read More