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.

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 

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Watch the recorded video or click here to review the PowerPoint slides.