The National Registry of Rare Kidney Diseases (RaDaR) brings together information about people living with rare kidney conditions, including Alport syndrome. This helps researchers better understand these conditions and supports future research.
As of 1 October 2026, 1,389 people living with Alport were enrolled in RaDaR. Their participation helps build a stronger picture of life with Alport and provides a valuable resource for research.
Alport UK encourages people living with Alport and their families to find out about the registry. By connecting our community with research opportunities, we help ensure that people living with Alport are part of efforts to improve understanding and care.
How to join
If you are interested in joining RaDaR, please speak to your local renal (kidney) team. They can discuss participation with you and advise on the next steps.
If you have difficulty finding out how to join through your renal team, please contact Alport UK at info@alportuk.org. We can help you find the right contact for further guidance.