Patient Registry for Refsum Disease

Exciting news! Global DARE Foundation has partnered with Sandford CoRDS to deliver a patient registry for Refsum Disease. It will be the first of its kind. The agreement was signed this week and we are working toward launching a patient registry this summer. A patient registry will allow us to collect valuable data to drive forward research. Watch this video to learn a more about Sandford CoRDS. https://vimeo.com/394229336
#CureRefsum #NeverGiveUp

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