CoRDS Podcast on Global DARE's Patient Registry

In the November edition of CoRDS Cast, Alyssa Mendel sits down with Kristie DeMarco who is the president and founder of the Global DARE Foundation. In 2019 Kristie was diagnosed with Refsum through genetic testing. In two years she went from an iron man triathlete to walking in constant pain along with losing peripheral vision and sense of smell. Refsum is a genetic disorder that affects the metabolism of Phytanic Acid which is found in foods like red meat, dairy, and fish. Symptoms of this condition include retinitis pigmentosa, loss of smell, hearing loss, neuropathy, ataxia, and itchy skin. Early diagnosis is critical to get the specific diet for Refsum to slow down symptoms. Click this link to listen to the podcast:
https://anchor.fm/cords-cast/episodes/Episode-37---The-Global-DARE-Foundation-e1ac3o1/a-a6tll2g

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