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XP at
the Houses of Parliament
On
27th November 2002, Sandra Webb was invited to give a talk to the All
Party Parliamentary Group on Skin at the Houses of Parliament, chaired by the
Rt. Hon. Bruce George MP. Sandra
was a guest speaker along with James Partridge of Changing Faces. The aim of the talk was to give an insight into the work of our Support Group and what it is like to live with XP. To demonstrate the life of an XP patient, Sandra gave a power point presentation called �A day in the life of Alex�. The talk was very well received and we were even asked to provide a copy of the presentation to a hospital who wishes to use it in training their nurses. Copies of the presentation and their notes can be obtained from the XP office. We ask for a donation towards the copying onto CD and postage. The talk came at a very appropriate time as the All Party group is now looking at the Psychological and Social consequences of Skin Disease. You can be part of this enquiry.A copy of the Questionaire is here. If you wish to take part, please send your answers to Sandra Webb at XP Headquarters and they will be forwarded along with the XP Support Groups� views.
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