AKF President and CEO LaVarne Burton kicks off the first episode of The Kidney Collective™'s new season, "Rare Voices, Relatable Stories," with a conversation with Donna Cryer, founder of the Global Liver Institute, a global nonprofit patient advocacy organization. Donna lives with a rare autoimmune liver disease, received a liver transplant more than 30 years ago and has stage 3 chronic kidney disease (CKD). Donna and LaVarne discuss the ways that liver and kidney health are connected and how Donna's difficulty getting an accurate diagnosis is reflective of many people living with a rare disease — especially if they are people of color. Donna also describes how her faith, positivity and perseverance through the years have allowed her to be a fierce patient advocate, to doggedly pursue her career aspirations and to navigate the transition to being labeled "patient" with grace and humor — even if it means taking advantage of your jaundice to create an unforgettable Halloween costume. Donna and LaVarne also discuss ways that Donna believes the U.S. transplant system needs to change and how Donna's connections to the kidney community helped prepare her to manage her CKD.  

Donna has recently stepped back as CEO of the Global Liver Institute and just moved with her husband to Pennsylvania to be closer to family.  

More resources:

• Rare Kidney Disease Action Network
• Rare kidney diseases: Understanding, support and solutions
• Global Liver Institute
• Join our Advocacy Network
• Unknown Causes of Kidney Disease Project
• Newly diagnosed chronic kidney disease (CKD)
• Guide: Talking about your rare kidney disease
• Guide: Your Guide to Kidney Transplant