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Porphyria questionnaire

In the summer of 2006 many of our members completed a questionnaire we sent them.  The results were summarised the following year, and presented to porphyria medical experts, and at BPA meetings.  A report of the results can be downloaded here.

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AGM and half-day conference

Saturday, 6th October, 2007, in Cardiff

We had a half-day conference in University Hospital of Wales, Heath Park, Cardiff, CF14 4XN. It will be starting at 2.30

We had a brief AGM. Then there were talks on porphyria by Dr Mike Badminton, a leading UK expert on porphyria, and then Dr Ruwani Katugampola will be reporting on her research work on CEP which we are helping to fund.

There was then a question and answer session on both porphyria and the BPA , followed by a chance to talk to other people with porphyria, over a free buffet tea!

 

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Open committee meeting Aug 2007

We held an open committee meeting of the BPA on the afternoon of 23rd June 2007, in Durham City.

It was at Elvet Methodist Church,  Old Elvet, Durham,   DH1 3HL,
and started at 2.30pm .

(Our apologies that a recent letter to our members gave the wrong date!)

 

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OPEN DAY at Kings College Hospital

Saturday, 2nd June, 2007

Kings College  Hospital hosted an Open Day on porphyria on Saturday June 3rd, in association with the British Porphyria Association.

It was held at King’s College Hospital, Denmark Hill, London SE5.

We started at 10.30, with talks in the morning.  These were on the various types of porphyria and their testing. Following lunch we had a question and answer session; and then a tour of the labs for BPA members.

Previous open days have proved to be very popular, so did this one.

 

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Open committee meeting Jan 2007

We held a committee meeting of the BPA on 17th February, 2007, in Reading.
It started at 2pm, and finished by 6.00, after a buffet tea.

It was held at:      Wesley Methodist Church Hall
84 Queens Road,  Reading,   RG1 4BW

As well as the formal business, we will be giving a summary of the results of the questionnaire on acute porphyria attacks we sent out last year.   Also we will be showing the DVD on porphyria produced by the American Porphyria Foundation.  It covers all types of porphyria.

Following the meeting, there will be informal discussions and the opportunity to talk to other members.

If you wish to attend, please let us know.

 

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