On Friday 29 May we will be holding our Open Day in Leeds. The meeting is free to attend and will be held at Devonshire Hall which is one of the University of Leeds’ city centre campuses. The programme will start with registration and refreshments at 10am, for a 10.30am start, and will finish with refreshments at around 4pm, lunch will also be provided.
The programme is coming together nicely and we have already confirmed the following speakers: Dr Stein (one of the lead acute specialists who deals with some of the most severe acute patients); a consultant Clinical Biochemist from the Specialist Laboratories in Leeds; also a representative from Clinuvel Pharmaceuticals Ltd.; a representative from Alnylam Pharmaceuticals; a window film company and a patient giving her experience. In addition to these talks, we are planning on having a breakout area for any younger people who attend, with some games and a couple of films to watch. The day will conclude with a question and answer session, and time for informal chats with other porphyria patients and their families.
Would you like to pose any questions to the experts?
In an attempt to really meet our members’ needs, all of the speakers have agreed that we can pose questions before the meeting, and they will do their best to answer these questions (time permitting) throughout the day. Please send any questions that you have, in advance, to sue.burrell@porphyria.org.uk.
Live Twitter Feed for the Open Day in Leeds
We have been looking into ways to make our meetings more interactive and accessible, after a suggestion on Facebook for the meetings to be recorded and then either streamed live or uploaded online later. This is something we would love to look into for future events, but feel that we would need a little more time to do this properly.
In an attempt to increase accessibility and interaction we are pleased to announce that Jo Taylor has volunteered to hold a ‘Live Twitter Feed’, for questions and comments that can be posed to the speakers on the day. We will endeavour to answer as many questions as possible, but as this is the first time that we’ll be trialling this technology, please be patient if for any reason we have any teething problems on the day!