Rare Disease
The Rare Disease Committee provides strategic oversight, support and direction for the National Registry of Rare Kidney Diseases (RaDaR) and its Operational Management Group. It sets priorities for RaDaR, reviews progress and considers developments that could affect its delivery or future direction.
The committee was established following the launch of the first UK strategy for rare kidney diseases in 2010. It was refreshed in 2024 following a review of the strategy and the continued development of RaDaR and its Rare Disease Groups.
What the committee does
The committee’s responsibilities include:
- Setting priorities and objectives for the UKKA’s work on rare kidney diseases
- Developing and reviewing the five-year strategic plan for RaDaR
- Monitoring RaDaR’s progress and ensuring it continues to meet its aims
- Considering clinical, scientific and policy developments that may affect rare kidney disease services
- Informing high-level recommendations for rare kidney disease care and pathways
- Reviewing proposals for new Rare Disease Groups
- Overseeing strategic decisions about which conditions and patient groups are included in RaDaR
- Establishing time-limited working groups to address specific priorities