Refsum Disease Archives - Patient Worthy

Kristie’s Story Part 3: Global DARE Foundation – Advocating for a Cure

Post author:Rebekah
Post published:May 20, 2020
Post category:Rare Disease Refsum Disease
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Click here to read part 1 and here to read part 2 After coming back from the Global Genes conference, Kristie was convinced that establishing a foundation was the right…

Kristie’s Story Part 2: Adjusting After the Diagnosis

Post author:Rebekah
Post published:May 19, 2020
Post category:Rare Disease Refsum Disease
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To read part 1 click here Kristie’s medical mystery was now solved. What was the next step? After speaking with her genetic counselor about her results, Kristie was referred to…

Kristie’s Story Part 1: Journey to a Diagnosis

Post author:Rebekah
Post published:May 18, 2020
Post category:Rare Disease Refsum Disease
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Kristie DeMarco was an extreme athlete- constantly training for triathlons, ironman races, ice swimming, and open water swimming. She loved to compete in various feats of strength and endurance. Overall,…

Kristie’s Story Part 3: Global DARE Foundation – Advocating for a Cure

Kristie’s Story Part 2: Adjusting After the Diagnosis

Kristie’s Story Part 1: Journey to a Diagnosis

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