BPA Festival - 20th Anniversary
BPA Festival: Celebrating 20 YEARS of The British Porphyria Association
BPA held a celebratory Festival event at the fantastic Science and Industry Museum 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 2019, 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!
Our BPA festival comprised of three main stages hosting a variety of sessions and an exceptional line-up of speakers, where attendees were able to design a personalised agenda for the day! The main themes revolved around understanding strategies to help patients gain control of their condition, a wealth of personal stories and experiences and a focus on connecting with others.
Main set list/programme
Child and young adult set list/programme
The three main stages to choose from were:
UNDERSTAND
This stage focused on the science of porphyria, management of symptoms and treatments for porphyria, as well as provided updates in the field of research. This stage was suitable for patients who wanted a deeper understanding of their porphyria, or for medical professionals.
CONNECT
This stage was patient centred and focused on patients and their personal stories, interviews and interactive discussions. Suitable for all, this stage aimed to help you to realise that you’re not alone.
TAKE CONTROL
This stage focused on mental health and well-being. It also focused on ways to help you or your family take control and get the best out of life. Whether finding new activities, looking at alternative therapies or learning how to relax.
There were plenty of opportunities to connect with other people with porphyria, as well as a RELAX zone and a CHILDCARE room.
