Do you have Refsum Disease?
Defeat
Adult Refsum Everywhere
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
Presentation on the Updated Refsum Diet Guide
Boston Refsum Center of Excellence
Refsum Clinic at Guy's and St. Thomas Hospital
Refsum Disease - Clinical Care Panel
Adult Refsum Disease - Patient Experience Panel
Refsum Disease Research Panel
Adult Refsum Disease - Patient Experience Panel
Refsum Disease - We DARE to Believe
Introduction to Adult Refsum Disease
History of the Refsum Disease
Refsum Disease: Phytanic Acid 101
Adult Refsum Disease: Introduction to Food Testing
Food Label Reading for Adult Refsum Disease
Illness and Fasting for Adult Refsum Disease
Exercise and Adult Refsum Disease
Why are mouse models studies important to Refsum Disease research?
Part 1: Why are Metabolomic and Lipidomic studies important to Refsum Disease research?
Part 2: Why are Metabolomic and Lipidomic studies important to Refsum Disease research?
Meet Global DARE Foundation
Past Webinars
Phytanic Acid Analysis and Interpretation - Laboratory and Clinical considerations
On October 18, 2021, Professor Dr. Jean-Marc Nuoffer, MD from the University Hospital in Bern, Switzerland discussed Phytanic Acid Analysis and Interpretation
Watch the recorded video or click below to review the PowerPoint slides.
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.
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.