DARE Videos
As part of Global DARE Foundation's goals we look to raise awareness and conduct educational webinars and videos to all that are interested in learning more about Refsum Disease
Refsum Patient Registry Overview
On August 10, 2020, Kristie DeMarco from DARE Fand Polly Gill from CoRDS provided an overview and demonstration of the newly released Refsum Patient Registry. The first ever patient registry for Refsum Disease.
Watch the recorded video or click here to review the PowerPoint slides.
Gene Therapy for Refsum Disease
On August 7, 2020, Ryan Butler, PhD, Assistant Professor at UT Southwestern Medical Center presented on Gene Therapy as a potential future therapy for Refsum.
Watch the recorded video or click here to review the PowerPoint slides.
Refsum Diet Overview & Discussion
On July 24, 2020, Eleanor Baldwin & Sarah Firman the dietitians at Guy's & St. Thomas Hospital in London presented on the Refsum Disease Diet.
Watch the recorded video or click here to review the PowerPoint slides.
Science behind Refsum Disease
On July 1, 2020, Professor Ronald JA Wanders, PhD & Dr. Sacha Ferdinandussa, PhD from Academic Medical Center, UMC presented on the Science behind Refsum Disease
Watch the recorded video or click here to review the PowerPoint slides.
ULF Conference Presentation
On June 25, 2020, Kristie DeMarco, President Global DARE Foundation & Dr Florian Eichler, MD the Associate Professor of Neurology at Mass General Hospital and Harvard Medical school presented on Refsum Disease at the ULF Conference.
Watch the recorded video or click here to review the PowerPoint slides.
Clinical Overview of Refsum Disease
On June 12, 2020, Professor Anthony Wierzbicki, PhD, from the Guy's & St. Thomas Hospital in London presented a Clinical Overview of Refsum Disease.
Watch the recorded video or click here to review the PowerPoint slides.