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.

Ireland Conference: Dublin – Sunday 23 June 2019

We are delighted to be inviting you to attend our very first ever conference in Ireland. This will be in Dublin at the Ashling Hotel on Sunday 23 June 2019 from 1200 to 1700.

The invitation is open to all porphyria patients and their support networks, and it’s free to attend.

The programme is still being finalised but, as usual, there will be doctor talks with the support of various porphyria specialists from across the UK and Ireland, as well as patient talks, updates on research and plenty of opportunities to speak with other porphyria patients and their families/friends.

Please let sue.burrell@porphyria.org.uk know ASAP to register your interest in attending.


20th Anniversary Festival – Manchester – Saturday 12 October 2019

We’re excited to invite you to our 20th Anniversary Festival, celebrating 20 years of The British Porphyria Association.

Join us at the fantastic Science and Industry Museum in Manchester on Saturday 12 October 2019 for the first ever porphyria festival designed especially for you!

With three main stages hosting a variety of sessions and an exceptional line-up of speakers, you can design your personal agenda for the day! Whether that’s understanding strategies to help you gain control of your condition, listening to a wealth of personal stories and experiences or focusing on connecting with others, our 20th anniversary event is designed with you at the heart. Learn more.

Register NOW for your free tickets on Eventbrite.com.

Both events are 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 sue.burrell@porphyria.org.uk or call 0300 30 200 30.  We will send further details out a short while before each event.

At the beginning of October 2017, we held our Autumn Conference and AGM in Cardiff. The meeting was well attended with excellent feedback about the content and the opportunities to chat with others.

We are extremely grateful to all of the speakers/organisers who helped to make the day such a success. But special thanks go to Dr Badminton and Tricia Gardiner from the University Hospital of Wales in Cardiff/NAPS who were pivotal in providing excellent content and support, both in planning and on the day.

If you missed the day and would like to catch up on some of the content, please see the links below: