helpline: 0300 30 200 30
helpline@porphyria.org.uk

Elizabeth

Autumn Conference and AGM – 6 September 2014

Our BPA Autumn Conference and AGM will be held in the Mayo Building at Salford Royal Hospital, Salford on Saturday 6 September 2014 and will run from 10:45am to 3:15pm. The meeting is free to attend.

The programme will start with registration and refreshments at 10:45am, for an 11:00am start. An hour-long lunch break will also be provided to allow ample opportunities to informally meet and talk with other porphyria patients and their families. The meeting will finish with a final refreshment break at around 3:00 to 3:15pm.

There will be a clinical talk from Professor Felicity Stewart, a talk on living with EPP pain from a mother and her son, a talk from a patient with AIP, as well as plenty of formal and informal opportunities to ask questions with clinicians or to talk with other people with porphyria. In addition, Joanne Osman and Liz Gaskell from the Salford Royal Photobiology Unit will be available over the lunchtime period to talk to members and advise on sun protection.

If you would like to attend, please contact us for more information and directions: 0300 30 200 30 or helpline@porphyria.org.uk.  

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Annual Open Day – Cardiff – 7 June 2014

On Saturday 7 June 2014 we held our Open Day at the University Hospital of Wales, Cardiff.  The meeting was a great success and patients get very involved in the discussions. The talks included a presentations from patients, a clinical psychologist, talks on acute and cutaneous porphyrias from porphyria specialists, as well as a talk on some new research. There was a question and answer session, and time for informal chats with other porphyria patients and their families. A virtual tour of the laboratories, showed where the tests for porphyria are conducted.

 

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