Kristie’s Story Part 3: Global DARE Foundation – Advocating for a Cure
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
- Rare Disease News
Global DARE Foundation
Global DARE (Defeat Adult Refsum Disease Everywhere) Foundation
Refsum disease is caused by a faulty gene (PHYH or PEX7) which results in the lack of an enzyme that doesn’t allow the oxidation of a fatty acid called Phytanic Acid and it accumulates in the blood and fat tissues. Phytanic acid is not produced in the body but found in many foods. The highest concentration of phytanic acid is found in dairy, beef, lamb and some fish.
Global DARE Foundation’s mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease.
Our goal is to support research, education initiatives, awareness campaigns, and advocacy. Driving research is at the center of what we do because we DARE to believe there is a cure for Adult Refsum Disease.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
- Refsum Disease
Patient Worthy Posts on Refsum Disease
Kristie’s Story Part 2: Adjusting After the Diagnosis
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
Kristie’s Story Part 1: Journey to a Diagnosis
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
