The Global DARE Foundation Story - Look How Far We’ve Come Together!

Global DARE Foundation's mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease. DARE stands for Defeat Adult Refsum Everywhere. We DARE to believe there is a cure for Adult Refsum Disease.

In the four short years since its creation, the Foundation has made impressive strides in spreading Awareness of Refsum Disease and symptoms, funding Research that can bring life-changing treatments to reality and creating a Community for Refsum patients, families, supporters, educators, scientists and medical specialists all who are dedicated to working together toward this important goal.

Some examples of our accomplishments include:

Presenting two successful Refsum Awareness Weeks in 2022 and 2023 offering educational webinars and videos, interactive seminars, panel discussions with medical and scientific experts, and a chance for folks to participate in community based fundraising activities.

Allocating $40,000 for testing over a hundred foods and ingredients to introduce the Refsum Diet Guide. The Guide helps patients shape dietary choices and avoid foods high in phytanic acid which is a proven factor in Refsum disease.

Global DARE approved funding of $60,000 towards generating a robust Mouse Model for Refsum Disease that can test innovative therapies aimed at improving treatments for Refsum Disease.

Hosted the first hybrid Refsum event at the ULF 2023 Family Conference which was attended by patients,researchers and medical professionals.

But none of these accomplishments would have happened without your support -Our community, our advisors, and our Refsum family. We thank you! And we hope you will continue with us on this critical journey to make life easier for those with Refsum. Our Annual Appeal begins November 15 and we’re asking for your help to continue with the important work we’re doing. Share the word about Refsum, and encourage others who care to become part of our community. Any donation that you make helps the entire community.

Please contact us by email (info@globaldarefoundation.org) if you have any questions.

Watch this short video to learn more about Refsum Disease and the work of Global DARE Foundation.

2023 DARE Annual Appeal

Help Raise $20,000 towards Global DARE Foundation's programs to support improving the lives of people Refsum

Team Members