Porphyria information days

We try to arrange two Open Days / Conferences a year for our members. These events help members understand their porphyria, and enable them to meet other people who are also living with porphyria.


Our 2017 Autumn Conference and AGM will be held at the Holiday Inn Cardiff North M4, J32 on Saturday 7th October 2017 (9.30 am to 4.15 pm), with the support of Dr Badminton and the team from the University Hospital of Wales, Cardiff. As always, we will have updates on Clinuvel and Alnylam as well as various other talks from doctors, nurses and patients about living with porphyria. There will be plenty of opportunities to talk with others affected by porphyria, as we plan to group sessions together to allow a specific cutaneous section and an acute section, meaning that people will be able to use a breakout room for informal discussions, instead of attending talks that may not be as relevant to them.

The Autumn Conference is free to attend, but booking is essential. If you would be interested in attending, please forward the names of anyone wishing to come with you to liz.gill@porphyria.org.uk or call 0300 30 200 30.  We will send further details out a short while before the event.

If you wish to stay at the hotel before or after the event, the BPA have been able to secure preferential rates of £75 per room/night for bed and breakfast; a number of rooms have been provisionally allocated for the Friday and Saturday, these will be held until 1st September – they are available on a first come, first served basis. Please contact the hotel direct on 02920 522262, and ask for Gemma. The booking code is BPA071017. Any rooms booked after that date will be subject to the best available rates. Please note that these rooms are payable at the time of booking and are non-refundable.


We will be holding two meetings in 2018.

Our Open Day is confirmed for the 9th June 2018 and will be held at the Queen Elizabeth Hospital Teaching & Learning Centre in Glasgow.

Our Autumn Conference/AGM date and location will be confirmed soon.