Claire's message on embracing her "new normal" after a devastating rare disease diagnosis resonates with any who are finding resilience during periods of intense change.
Each morning, I make a choice to harness joy, despite navigating pain and day-to-day challenges of living with a rare disease, acute hepatic porphyria. A speaker, creator and rare disease advocate, I believe in the power of speaking truth to generate hope and build connections to impact positive change.
I am the Iowa state ambassador for the National Organization for Rare Diseases' Rare Action Network, serve on the Young Advisory Council of UnityPoint Health Des Moines, volunteer with the American Porphyria Foundation and am co-founder of This Porphyria Life, an online porphyria community for patients and those who love them. I have a Master’s in Public Health from the University of Iowa, and live in Des Moines with my fiance, Michael, and his two children.