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Global DARE Foundation Awarded Prestigious Chan Zuckerberg Initiative’s Rare as One Program Grant 

We DARE to Believe

Driving research is at the center of what we do because we DARE to believe there is a cure for Adult Refsum Disease. 

Our Mission

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. 

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Our goal is to support research, education initiatives, awareness campaigns, and advocacy.

Read Global DARE Foundation's 2023 Annual Report to learn how we are achieving our mission

What is Refsum Disease?

Refsum Disease is a genetic disorder impacting the metabolism of phytanic acid.  The key symptoms are Retinitis Pigmentosa, loss of smell, hearing loss, numbness, balance issues, dry scaly skin, shortened fingers and toes.  

Other Languages:  German, Dutch, French, Spanish

Refsum Diet

Review the details about the Low Phytanic Acid Diet used for Long Term Management of Refsum Disease.  Following this diet can slow vision and hearing loss and lessen other symptoms.

Food blog

Refsum Patient Registry

Help us bring patients, families, clinicians and researchers together to gain a better understanding of Refsum Disease

Microscope

Sharing Refsum Experiences

DARE

Videos

Watch recorded webinars and educational videos on Refsum Disease

Annual 
Reports

Read our  2021, 2022 and 2023 annual reports to see how we have been accomplishing our mission

Refsum Community

Connection

Learn more on how to connect with the Refsum Community

Join our Mailing List

Sign up for our mailing list to receive our newsletter and be informed on upcoming events & new research initiatives.

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