Chair: Dr Danny Gale
The Rare Diseases Committee (RDC) was formed to implement the Integrated strategy for rare kidney diseases, launched by the Renal 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 Renal 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 (formally 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.
Terms of Reference
Rare Disease Committee
- Paul Bristow, Kidney Care UK
- Detlef Bockenhauer, Great Ormond Street Hospital
- Ron Cullen, UK Renal Registry
- Sandra Currie, Kidney Research UK
- Elaine Davies, Kidney Research UK
- Damian Fogarty, Queen’s University, Belfast
- Danny Gale, University College London (Chair)
- Bruce Hendry, Kings College London,
- Graham Lipkin, University Hospital Birmingham
- Liz Lightstone, Imperial College London
- Fiona Loud, Kidney Care UK
- Martin Raftery, The Royal London Hospital
- Moin Saleem, Bristol Children’s Hospital
- Keith Simpson, UK Renal Registry
- Neil Turner, Edinburgh Royal Infirmary
- Paul Warwicker, Lister Hospital, Stevenage
- David Wheeler, University College London
Melanie Dillon – RaDaR Operations Manager – Melanie.Dillon@renalregistry.nhs.uk