Following a strategic revamp of the Refsum diet, Eleanor Baldwin and Sarah Firman, expert dietitians from the Adult Inherited Metabolic Diseases team at Guys & St. Thomas Hospital, London, delivered a presentation unveiling the updated Refsum Diet Guidelines. These guidelines are based on the latest food testing program, generously funded by the Global DARE Foundation.

Global DARE Foundation hosted the first hybrid Refsum Breakout session at the United Leukodystrophy Foundation (ULF) conference in Chicago on June 23rd. The session was attended by patients, researchers and medical professionals

On October 18, 2021, Professor Dr. Jean-Marc Nuoffer, MD from the University Hospital in Bern, Switzerland discussed Phytanic Acid Analysis and Interpretation

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.

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.

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

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.

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

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.

On June 12, 2020, Professor Anthony Wierzbicki, PhD, from the Guy's & St. Thomas Hospital in London presented a Clinical Overview of Refsum Disease