Introduction
Chair: Dr Danny Gale
The Rare Diseases Committee (RDC) was formed to implement the Integrated strategy for rare kidney diseases, launched by the UK Kidney Association in 2010. In particular, it links the Executive and membership with the day to day business of the strategy, which is enacted through the Rare Diseases Operational Management Board. This Board has representation from the RDC and the UK Renal Registry and oversees the day-to-day running of the rare renal diseases registry – RaDaR. It reports to the UK Kidney Association’s Renal Informatics Governance Board (RIGB).
The set-up costs and the first 3 years of operation 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 has been achieved from 2016 with an increase in capitation fee to cover both RaDaR and RareRenal.org, the patient and clinician information website.
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 the RaDaR rare disease registry to assemble high definition information on rare diseases and to serve as a platform for identifying patient cohorts for translational research.
Information about the work of the rare diseases committee can be found at the RareRenal website, which contains high quality, Information Standard accredited patient information on all conditions covered by the RaDaR rare disease registry. The site also contains valuable advice for UK clinicians on rare renal diseases and updates from the rare disease groups, including their annual reports and details of patient and clinician information events.
Members
- Fiona Braddon, UK Renal Registry
- Kate Bramham, Kings College London (Deputy Chair)
- Paul Bristow, Kidney Care UK
- Ron Cullen, UK Renal Registry
- Sandra Currie, Kidney Research UK
- Elaine Davies, Kidney Research UK
- Garry King, UK Renal Registry
- Danny Gale, University College London (Chair)
- Matt Hall, Nottingham University Hospital
- Tess Harris, PKD Charity
- Graham Lipkin, University Hospital Birmingham
- Fiona Loud, Kidney Care UK
- James Metcalf, UK Renal Registry
- Moin Saleem, Bristol Children’s Hospital
- Keith Simpson, UK Renal Registry
- Retha Steenkamp, UK Renal Registry
- Neil Turner, Edinburgh Royal Infirmary