Help Support our Annual Food Testing Campaign

This year DARE funded a project to test 60 more foods.  It is so important that we continue this food testing on a yearly basis to increase the number of foods tested.  This has a direct impact on the daily quality of life of people with Refsum Disease. 


Please help support this important initiative.  Any amount will make a difference.

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, itchy 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


Read up-to-date news on the work of Global DARE Foundation

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. 

Our goal is to support research, education initiatives, awareness campaigns, and advocacy. Driving research is at the center of what we do because we DARE to believe there is a cure for Adult Refsum Disease. 

Read Global DARE Foundation's 2021 Annual Report to learn how we are achieving our mission



Refsum Advocacy plan

Refsum Community


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