Porphyria information days

We usually try to arrange one or 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.

19 September 2020

Online...Live...Together

Following the amazing success of the festival, we had hoped to bring you a great event in September 2020 in Milton Keynes. However, with all of the uncertainty around Covid-19, we’ve decided not to hold a face-to-face gathering this year.

However, we’re really excited to announce that we’re holding a LIVE, ONLINE event to CONNECT everyone TOGETHER in a really accessible way.

We hope that you’ll join us for the whole day, but you also have the flexibility to simply choose the sessions most relevant to you, as the day will be broken into sessions that you can dip in and out of. Draft programme

We aim to make the day interactive and will be sending out attendee joining packs for everyone attending with various instructions and elements to help you get the most from the day, please remember to indicate how many child activity packs you would like (as there will be some fun bits for the kids too).

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

Events are free to attend, but booking is essential. If you would be interested in attending, please register via Eventbrite. If you have any queries, please contact helpline@porphyria.org.uk or call 0300 30 200 30.  We will send further details out a short while before each event.

The BPA held a celebratory Festival event in Manchester to commemorate our 20th Anniversary. The day was truly AMAZING and we would like to give a HUGE thank you to all 171 people who attended and got enthusiastically involved in the workshops and interactive sessions – you made the day what it was! We’d also like to say a MASSIVE thank you to all of the speakers, all of the BPA volunteers, the videographers, the STEM ambassadors, the childcare team, the catering and venue staff, and anyone else who helped in the realisation of this fantastic event!

Thank you also to our financial supporters. In January, we were fortunate to be a successful recipient in Alnylam Pharmaceuticals’ Advocacy for Impact competitive grant programme. This meant that an event of this scale really was possible! We would also like to thank Recordati Rare Diseases (previously known as Orphan Europe) and Clinuvel (UK) Ltd for their continued support and grants which helped to support the Festival. Indeed, as Antony Fearn mentioned in his introduction to the festival day, a patient event of this scale dedicated to porphyria has not been seen anywhere in the world before!

For more information on how our amazing festival went, please see our 20th Anniversary Festival page.

In June this year, the BPA were delighted to hold the first ever porphyria patient conference in Dublin, Ireland.  A total of 44 people attended, mainly from Dublin and the surrounding areas, but a number travelled from Northern Ireland too – it really was wonderful to see so many people! The feedback from the day was very positive and we were delighted to have brought so many people together – many had never before met others with porphyria.

We are very grateful to Dr Vivion Crowley and Nadia Brazil who helped in the preparations for the day, whilst also speaking alongside Dr Mike Badminton from Cardiff, Dr Vicky McGuire and Nicki Traynor from Dundee and Dr Bob Sarkany from London – all of whom very kindly travelled to Ireland to support this great event.

The BPA would also like to extend a massive thank you to Recordati Rare Diseases (formerly Orphan Europe) who provided a grant which helped with the financing of this meeting.

The BPA held two events in 2018, one in Glasgow and one in Reading. We were delighted to see so many new faces with a record number of 124 people attending in total. The feedback was very positive and we look forward to building this into next years’ conferences.

We’d also like to extend a sincere thank you to Orphan Europe, who again donated a significant amount, through a grant, to help us put on both of these amazing events.

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: