Understanding Rare Kidney Disease (RKD)
RKD stands for rare kidney disease. It’s estimated that 60-80 per 100,000 people in the United States currently live with a rare kidney disease. There are approximately 150 known rare kidney diseases.* RKD is typically diagnosed much younger and often progresses more quickly to kidney failure than more common forms of chronic kidney disease (CKD).
When people hear about kidney disease, they often think of CKD — which impacts millions, especially individuals living with diabetes and high blood pressure.
Little is commonly known about RKD. Due to low public awareness, people living with a rare kidney disease can face challenges in getting diagnosed and finding support.
What is RKD & Me?
In a world where millions of people live with chronic kidney disease, commonly known as CKD, rare kidney diseases have been given little attention and are often misunderstood.
Travere Therapeutics, NephCure and IgA Nephropathy Foundation have teamed up to change that and increase awareness of rare kidney disease — or RKD — through the stories of people living with RKD and caregivers told through powerful letters written to their younger selves and videos featuring real people sharing their personal stories.
The RKD & Me campaign puts rare kidney disease front and center with the aim of creating more awareness and understanding of the unique experiences of people living with RKD.
Co-Created with the RKD Community
Created together with the rare kidney disease community through a nationwide listening tour, RKD & Me is a collaboration to raise awareness of RKD — bringing forward what the RKD community wants people to understand about what it’s like to live with a rare form of a widespread condition.
Many people living with RKD find it hard to talk to their loved ones, coworkers and friends about their diagnosis. But every person living with RKD has a unique story to share. No one living with RKD should feel misunderstood in their journey. Our hope is that as this movement grows, people living with RKD can impart the perspectives of their own journeys onto others, and lighten the burden of feeling isolated or alone.
Hear stories from real people affected by RKD
Sometimes the most powerful medicine isn’t found in prescriptions, but in the words of someone who has walked where you’re walking now.
Keyaira S.I’ve always known that my voice would impact others, but I never knew this would…
Rachel M.You are so tough and smart. Your childhood medical challenges will help you later…
María L.In this life you have to be strong, yes, oh yes! You are going to have to…
Stacey B.Younger self, your diagnosis does not define you. Your lab results do not define you…