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 care providers, and the public.
One of the newest resources that is now available is an episode of NORDpodTM featuring Dr. Rachel Bailey, an authority on developing gene therapies to treat neurodegenerative disorders. In the podcast that was released on March 31, Dr. Bailey and host Matthew Zachary set out to de-jargon gene therapy as they discuss recent advances and the hope this medical technique can bring to the rare disease community.
NORD also continues to work with its more than 330 patient organization members to recruit advocates to participate in the American Society for Gene and Cell Therapy (ASGCT)’s May 2021 workshop, “Patient Advocates’ Role in Advancing Gene Therapy.” By connecting patient advocacy organizations with researchers and scientists, we can enhance and accelerate the efforts underway to develop new courses of treatment. Information about the workshop can be found on ASGCT’s website.
Coming soon, NORD and our partners, PlatformQ Health and the ASGCT will be hosting a four-part continuing medical education (CME) series on gene therapy. To get notified about the dates for this cost-free learning module for clinicians, subscribe to NORD’s CME email list.
While we will continue to expand our library, please take advantage of our other existing resources linked below.
- Five-part Webinar Series on Gene Therapy
- Educational Video on Gene Therapy
- Four-Part Educational Videos on Gene Editing
- Gene Therapy Survey Results (Published in the Rare Neurological Report)