DARE Events

Global DARE Foundation conducts webinars and other events to engage and educate the Refsum Community.   

All times below are in Eastern Standard Time

Upcoming Events

    Past Events

    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 

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

    Contact us

    P.O.Box 865

    Windham, Maine 04062

    United States

    info@GlobalDAREFoundation.org

    Follow us

    • Facebook
    • LinkedIn Social Icon
    • YouTube

    EIN: 84-3343395

    501(c)(3) IRS Approval:

    Disclaimer:
    This website is not designed to diagnose, advise or provide medical opinions, treatment or services. It is for general knowledge purposes only. Please consult a licensed medical professional with all questions and concerns regarding a medical condition. 

    © 2020 Global DARE Foundation