Patient Registry for Refsum Disease

Today Global DARE Foundation launched the first ever patient registry for Adult Refsum Disease on the Sanford CoRDS platform. Going live with a patient registry is a big milestone and a great step in driving forward research for this disease. You can join the fight for a cure today by joining the registry for yourself or your loved one. All the information to join the registry is on our website below. We did conduct a live webinar today that has been recorded and made available for viewing on the website as well. Reach out to us with any questions.
https://www.defeatadultrefsumeverywhere.org/refsum-patient-registry

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