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

Adult Refsum Disease - Clinical Practice

On April 12, 2021, Dr. Radha Ramachandran, MD, PhD reviewed the clinical practice for treating people with Adult Refsum Disease at GSTT in the UK.

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

Refsum Disease from an Ophthalmology Perspective

On February23, 2021, Dr Bart Leroy, MD, PhD, Head of the Department of Ophthalmology at the Ghent University Hospital, presented the Ophthalmology side of Refsum Disease and the benefits of early diagnosis by clinicians.

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

Overview of the Refsum Disease Patient Registry

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 below to review the PowerPoint slides.  

Gene Therapy - A Potential 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 below 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 below 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 below 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 below 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 below to review the PowerPoint slides.