Rare disease workshop
Friday 5 July 2013
Venue: Royal Society Of Medicine, 1 Wimpole Street, LONDON, W1G 0AE
A joint meeting with UK Renal Association
This is a joint meeting with the UK Renal Association. For further information please contact the Academic Department via +44 (0)20 7290 3937 or email nephrology@rsm.ac.uk
9.30 am |
Registration and refreshments |
| Chair: Professor Bruce Hendry, Academic Vice President, Renal Association | |
10.00 am |
Welcome and introduction |
| Dr Mark Taylor, Chair, Renal Association Rare Disease Committee | |
10.15 am |
Setting up a rare disease registry |
| Professor Moin Saleem, Professor of Paediatric Renal Medicine, University of Bristol | |
10.45 am |
The patient perspective |
| Susie Gear, Management Consultant, Oxford | |
11.15 am |
From patient support to molecular analysis of a rare disease |
| Professor Fiona Karet, University of Cambridge | |
11.45 am |
Refreshments and networking break |
12.00 pm |
Genetic technology for the study of rare diseases |
| Dr Lucy Raymond, University of Cambridge | |
12.30 pm |
European initiatives in the analysis of rare diseases |
| Professor Robert Kleta, University College London | |
1.00 pm |
Lunch and networking break |
| Chair: Dr Raj Thuraisingham, President, Section of Nephrology, Royal Society of Medicine | |
2.00 pm |
UK initiatives in rare diseases |
| Professor John Bradley, University of Cambridge | |
2.45 pm |
The national plan for rare diseases - progress to date |
| Alastair Kent, The Genetic Alliance | |
3.15 pm |
Panel Discussion with Q&A: The nuts and bolts of rare disease care and study |
| Dr Mark Taylor, Professor Bruce Hendry, Professor Fiona Karet, Professor John Bradley, Professor Matthew Bellgard | |
4.30 pm |
Completion of evaluation forms and close of meeting |
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Meeting ref: NED02 CPD: 4 credits |
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Add the number of delegates in each category wishing to attend: |
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