Do you have Refsum Disease?
Defeat
Adult Refsum Everywhere
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
