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Refsum Disease

Home » Refsum Disease
Kristie’s Story Part 3:  Global DARE Foundation – Advocating for a Cure

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
  • Post comments:0 Comments

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…

Continue Reading 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 2: Adjusting After the Diagnosis

  • Post author:Rebekah
  • Post published:May 19, 2020
  • Post category:Rare Disease/Refsum Disease
  • Post comments:0 Comments

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…

Continue Reading Kristie’s Story Part 2: Adjusting After the Diagnosis
Kristie’s Story Part 1: Journey to a Diagnosis

Kristie’s Story Part 1: Journey to a Diagnosis

  • Post author:Rebekah
  • Post published:May 18, 2020
  • Post category:Rare Disease/Refsum Disease
  • Post comments:0 Comments

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,…

Continue Reading Kristie’s Story Part 1: Journey to a Diagnosis

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