Empowering the Rare Kidney Disease Community
A community to help you learn, connect, and take charge of your kidney health
If you’re living with a rare kidney disease or caring for someone who is, and you’re looking for information and connection, you’re in the right place.
Every experience with a rare kidney disease (RKD) is unique, and every step forward matters.
When it’s hard to find others who understand life with RKD, shared stories can help you feel more connected—and show what moving forward on your own terms can look like.
Through RKD & Me, you can explore valuable information about rare kidney disease, hear from others about their own experiences, and find a sense of community in what can sometimes feel like an isolating journey.
Learn
Find clear, reliable information about rare kidney disease, including educational resources and events to help you better understand what comes next.
Community
Connect with people living with RKD, caregivers, and advocates who understand your experience and can share insights along the way.
Share
Every journey with rare kidney disease is different. Share your story and help others feel seen and understood.
Stories from the RKD Community
Find strength in shared experiences—explore heartfelt stories from patients and caregivers navigating rare kidney diseases. Your journey isn’t one you have to walk alone.
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…
By sharing your experience, you can help others feel more connected and less alone.
What’s a “win” that’s kept you moving forward?
Share Your Story with the RKD Community
Living with a rare kidney disease can feel isolating. Recognizing both the challenges and the wins along the way can help you make sense of your path forward. Every experience shared can make a difference for someone else. Consider contributing your story to help others find connection and support.