Introduction

In 2010, the Renal Association and the British Association for Paediatric Nephrology launched the first UK strategy to a) improve the standard of care for patients with RKD and b) to drive the development of rare disease research. ​

The Rare Disease Committee, which reports into the UKKA's Operational Leadership Group, was formed to implement this strategy. 

The 2010 strategy had three aims:​

  1. ​Development of a UK Registry for Rare Kidney Diseases​​ - this has been achieved, and the RaDaR National Registry of Rare Kidney Diseases is currently the largest rare kidney disease registry in the world.
  2. Development of disease-specific working groups​​ - as at March 2025 there are 33 Rare Disease Groups linked to RaDaR, and further groups in development.
  3. Development of care pathways

The set-up costs and the first 3 years of operation of RaDaR were funded by grants from the Medical Research Council, Kidney Research UK and Kidney Care UK (formerly the British Kidney Patients Association), who generously pump primed the initiative. Long-term funding for RaDaR was achieved in 2016 with an increase in the capitation fee.

In 2024, the 2010 strategy was reviewed in order to develop a new strategy and five-year plan for 2025-2030. The Rare Disease Committee was refreshed as part of the strategy review and re-launched with new membership in November 2024.

There are three broad strands to the work of the Rare Disease Committee:

  • Developing and accrediting expert groups (Rare Disease Groups, RDGs) at a national level.
  • Empowering patients through the production of high-quality information and building patient-professional partnerships which are integral to the RDGs.
  • Overseeing the management of RaDaR to assemble high definition information on rare diseases and to serve as a platform for identifying patient cohorts for translational research.

Membership

  • UKKA Academic Vice Presidents (co-Chairs)
  • UKKA CEO
  • UKKA Research Administrator (Secretariat)
  • UKKA Director of Informatics Research
  • UKKA Senior Project Manager
  • UKKA Information Governance and Data Protection Officer
  • RaDaR Director
  • RaDaR Co-Director
  • RaDaR Operations Manager
  • Kidney Research UK representative
  • Kidney Care UK representative
  • National Kidney Federation representative
  • Paediatric Nephrology representative
  • RaDaR Rare Disease Group Leads
  • RaDaR Patient representatives

Contact

Susan Pywell, RaDaR Operations Manager, radar@ukkidney.org