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

DARE Fest 2022 Videos
Presentation on the Updated Refsum Diet Guide

Presentation on the Updated Refsum Diet Guide

01:06:06
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Boston Refsum Center of Excellence

Boston Refsum Center of Excellence

09:30
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Refsum Clinic at Guy's and St. Thomas Hospital

Refsum Clinic at Guy's and St. Thomas Hospital

20:15
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Refsum Disease - Clinical Care Panel

Refsum Disease - Clinical Care Panel

45:12
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Adult Refsum Disease - Patient Experience Panel

Adult Refsum Disease - Patient Experience Panel

52:12
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Refsum Disease Research Panel

Refsum Disease Research Panel

52:06
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Adult Refsum Disease - Patient Experience Panel

Adult Refsum Disease - Patient Experience Panel

57:48
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Refsum Disease - We DARE to Believe

Refsum Disease - We DARE to Believe

05:39
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Introduction to Adult Refsum Disease

Introduction to Adult Refsum Disease

24:44
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History of the Refsum Disease

History of the Refsum Disease

25:19
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Refsum Disease: Phytanic Acid 101

Refsum Disease: Phytanic Acid 101

19:55
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Adult Refsum Disease: Introduction to Food Testing

Adult Refsum Disease: Introduction to Food Testing

10:01
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Food Label Reading for Adult Refsum Disease

Food Label Reading for Adult Refsum Disease

16:14
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Illness and Fasting for Adult Refsum Disease

Illness and Fasting for Adult Refsum Disease

13:30
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Exercise and Adult Refsum Disease

Exercise and Adult Refsum Disease

11:52
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Why are mouse models studies important to Refsum Disease research?

Why are mouse models studies important to Refsum Disease research?

08:05
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Part 1: Why are Metabolomic and Lipidomic studies important to Refsum Disease research?

Part 1: Why are Metabolomic and Lipidomic studies important to Refsum Disease research?

14:45
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Part 2: Why are Metabolomic and Lipidomic studies important to Refsum Disease research?

Part 2: Why are Metabolomic and Lipidomic studies important to Refsum Disease research?

12:42
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Meet Global DARE Foundation

Meet Global DARE Foundation

15:20
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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.