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.
We were delighted to welcome members to our 2024 Alfresco event, a two-day residential outdoor activity weekend which took place at Thorpe Woodlands Adventure Centre in Thetford Forest, Norfolk. The event was designed to offer a safe residential environment in a sheltered forest providing excellent tree coverage from the sun, with numerous outdoor activities for children and young people affected by erythropoietic protoporphyria (EPP).
Participants of all ages were guided to learn skills and strategies to understand their limits, feel empowered to take control of future situations and connect with others.
Thank you to our generous sponsors for helping us make it happen: National Lottery Community Fund, the Society for the Study of Inborn Errors of Metabolism (SSIEM), Alpkit Foundation, Clinuvel, Coolibar, Disc Medicine, and Mitsubishi Tanube Pharma.
We were delighted to welcome a group of BPA members with EPP/XLP and other skin porphyrias to our first ever Peer Support Drop-In session on Monday 25 March at 18:30-19:30 online on Zoom. Thanks to its success we then held two more sessions on Monday 24 June and Monday 30 September.
The BPA’s new Peer Support Programme offers porphyria patients, as well as their family and friends, a safe and welcoming online space where you can join others with EPP to chat about challenges and gain tips on things that have worked for other families etc. The programme aims to help people living with porphyria to understand their condition, connect with others, build the confidence to take control, and share their story.
We were pleased to return to the Ashling Hotel, Dublin on Sunday 3 March 2024 from 10:00-17:00 for a much needed patient event in Ireland. This event was organised with the support of the team at St James’s Hospital, Dublin and the British and Irish Porphyria Network (BIPNET). In attendance was a mix of patients, their families/friends, and medical professionals.
The programme (see below) included doctor and patient talks, question and answer sessions, updates on research and a final social session providing plenty of opportunities to connect and share with other patients.
We were delighted to welcome attendees to our first in-person patient event of 2023 on 3-4 June at the Snowdome Conference facility in Tamworth.
We kicked things off with a social evening on the Saturday, gaving attendees the chance to CONNECT with others in the porphyria community and get involved in activities. The main patient day on Sunday gave attendees the chance to learn more about the porphyrias and UNDERSTAND what might help, to CONNECT with others, and to learn strategies to feel empowered to TAKE CONTROL. The day included two informative Q&A panel discussions, one focusing on skin and the other on the acutes. In addition, there was a session dedicated to patient stories. We are grateful to all the patients and porphyria specialists who spoke and were involved in the event.
An information pack with full details of the event can be found here. A transcript of the Skin porphyrias Q&A session can be found here.
We were delighted to get back to in-person events with a patient day in Dundee on Sunday 15 May, 2022. We also tackled another first for the BPA, where we livestreamed parts of our face-to-face event via a webinar to ensure the event was accessible for the whole porphyria community.
The day included two informative Q&A panel discussions, one focusing on skin and the other on the acutes. In addition, there was a specific focus on nurturing mental and physical health with expert presentations and lots of opportunities to ask questions and talk with the specialists and other patients.
We were grateful for the amazing support of Dr Vicky McGuire and Dr Robert Dawe from the Photobiology Unit in Dundee and a number of porphyria specialists (from various porphyria centres across Scotland and the UK) who spoke and were involved on the day.
Recordings from the day will soon be available on YouTube.
We were very excited to see you all at our second ONLINE and LIVE event that aimed to CONNECT and bring us all TOGETHER.
The day was broken into sessions to dip in and out of with a morning webinar and afternoon interactive session. See programme below.
Webinar content will be available on YouTube soon.
CONNECT 2020: Online… Live… Together…
We were delighted to welcome so many of you to our first ever online event on 19 September 2020. The webinar format integrated our AGM, a skin porphyrias interactive session, a kids EPP session, an interactive acute session and a social element with a quiz and discussion topics. A huge THANK YOU to all who took part in the day, enthusiastically answered the polls and asked so many brilliant questions. Your input was vital and culminated in some fascinating and enlightening discussion topics.
We’re immensely grateful for the support of Dr Bob Sarkany (photodermatology), Dr Penny Stein (acute porphyrias), Dr Deepak Ravindran (pain), Dr Rukshana Ali (psychology), Dr Vicky McGuire (photobiology), Dr Stephen Lombardelli (Alnylam) and Dr Kirstine Belongie (Mitsubishi) who dedicated time to prepare and pre-record videos for the day, and then also took time out of their weekends to offer us all their support and advice in the interactive sessions. THANK YOU!
Finally, we’d like to offer a huge thank you to our sponsors, Alnylam Pharmaceuticals, Clinuvel and Recordati Rare Diseases. Your continued assistance enables us to continue helping and supporting porphyria patients and their families at important events such as this one.
All of the pre-recorded content from the day is now available on our You Tube Channel as bite-sized videos on a selection of topics. Two examples are below, but you can see lots more on https://www.youtube.com/channel/UCP4eYSSJl01Xc1LxZ3l9eGw/videos
Questions asked during the day, as well as those that we ran out of time to ask our experts, have been formulated into an acute Q&A document and a skin porphyrias Q&A document.
Read the Connect 2020 report.
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:
- Agenda
- Introduction
- Summary of International Conference on Porphyrins and Porphyrias
- Complementary therapies
- Update from Alnylam (please see www.alnylam.com for up to date information)
- NAPS and role of a specialist nurse
- Drugs in acute porphyria
- Update from Clinuvel (please contact liz.gill@porphyria.org.uk for slides)