Rare Disease Groups

RaDaR’s Rare Disease Groups bring together healthcare professionals, researchers and patient representatives to improve understanding and care of rare kidney conditions. Each group focuses on a particular condition or several related conditions.

The groups help shape research priorities, define the condition-specific information collected through RaDaR and develop collaborative studies. Their work also includes reviewing patient outcomes, contributing to clinical care pathways and producing information for patients and families.

Setting up a Rare Disease Group

Learn about the requirements for establishing a new group, the application process and the responsibilities of the group lead.