26/04/11

Ciliopathy Special Interest Working Group Initial Meeting Wed 8th June 2011 13:30 at RA/BRS Annual Conference

Ciliopathy Special Interest Working Group

I am pleased to announce that the Renal Association/British Renal Society and Prof. Lorraine Harper have kindly provided us with a room, at the Renal Association/British Renal Society Annual Conference, to allow all interested parties to attend this initial meeting. This will be on Wednesday 8th June at 13:30 (Executive Room 7, Level 5A ) to coincide with the Rare Disease Sessions. Attendees will have to register for the Conference.

The purpose of the meeting will be to set up the Ciliopathy Special Interest Working Group in anticipation of funding opportunities which will become available through RADAR. The long term aims will be to have a core group of interested parties including clinicians and scientists

  • To develop a registry of Ciliopathy patients through RADAR
  • To advance research – basic scientific, translational and clinical
  • To develop best practice guidelines of these conditions
  • To develop support groups and sources of information for patients and their families
  • And much more….

I hope you can all attend and please feel free to invite anyone that you think may be interested in getting involved. Please ask them to e-mail me lkerecuk@doctors.org.uk so that I can keep a count on numbers for catering etc.

I look forward to seeing you all then,

Dr Larissa Kerecuk
Consultant Paediatric Nephrologist
Birmingham Children’s Hospital
Steelhouse Lane
Birmingham
B4 6NH