The British Porphyria Association (BPA) was established in 1999 by a group of patients and relatives who had experienced isolation and difficulties due to their diagnosis, and had found there to be a general lack of understanding and assistance available. The BPA became a registered charity in 2001 and is run by a committee of volunteers.
National Acute Porphyria Service (NAPS) changes
As most of our members will be aware, the National Acute Porphyria Service (NAPS) has recently been changed.
Despite significant efforts from the BPA committee, the porphyria centre at Addenbrooke’s Hospital, Cambridge has closed. When it was clear that Cambridge was closing, the committee pressurised NHS England (who manage the NAPS service) to keep Dr Penny Stein. At the last minute, that was successful, and Dr Stein has moved to King’s College Hospital, London. She is currently running outreach clinics in Peterborough and Middlesbrough, and continuing to run an outreach clinic in Leeds with Dr Barth. The other centres all remain as before.
Dr Stein’s address is:
Dr Penny Stein
Department of Haematological Medicine
King’s College Hospital NHS Foundation Trust
For any queries, please do not hesitate to contact our helpline on 0300 30 200 30 or firstname.lastname@example.org.
Administrator for the BPA
The British Porphyria Association is now employing a part-time administrator, and member support person. She is Sue Burrell (email@example.com.), who has severe AIP, and has been supporting the BPA for several years.
We usually have two open days / conferences a year. At these, we have talks by medical experts in porphyria and by patients; it is also a chance to meet and talk to other patients with porphyria. Our next one is in Salford on Friday 8th July 2016 – further details will be posted soon.
What does the BPA aim to do?
The Association aims to reach out to as many people as possible in order to improve the understanding of this condition, including:
- patients and relatives
- doctors and medical staff
- hospitals and research establishments
The porphyrias are a group of rare conditions and are often portrayed in a dismal light. Although the disorders can in some cases be very severe, there are many reasons to be optimistic and with the right information, many sufferers can live absolutely normal lives. Early diagnosis is vital if we are to improve the quality of life for those affected by it.
- The BPA’s primary aim is to improve understanding of the condition, raising awareness and ensuring that the portrayal is always accurate.
- The BPA raises funds in order to educate patients and their families about their condition.
- The BPA aims to provide an emotional support system for sufferers and their families and provides contacts with doctors and specialists.
- The BPA aims to facilitate understanding for doctors and other healthcare professionals.
- The BPA raises funding for new research into the field of porphyria and encourages new research projects.
Porphyria is pronounced similarly all over Europe, but the spelling varies considerably: porfiria, porfyrier, porfyria and porphiria.
Videos on EPP from the US – thank you NBC/Dateline
Please find below a couple of links to a really interesting documentary on EPP – this was aired in the states on NBC a few weeks ago… After speaking with the producer, he advised that he would get the segment uploaded onto a vimeo channel. Since then, it also appears to be on YouTube.
It is a very interesting watch for anyone with EPP or for anyone who supports someone with EPP… The BPA would love to be able to arrange some form of summer camp/event/holiday exchange for children with EPP – and would love to model it on the Camp Sundown provided in the US – let’s hope that this is something we can do in the not too distant future.
Hope you enjoy viewing the programme: