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.
Stop press: National Acute Porphyria Service (NAPS) changes
For those of you affected by the closure of the NAPS centre at Addenbrooke’s Hospital, Cambridge, please be assured that there are now short-term arrangements in place to cover the period from July to October 2014 until a more permanent solution is secured. NHS England will be working closely with patients and the BPA to ensure that the future of the service will work well for patients. For more information, please view this NHS England briefing, which will be also sent out to all affected patients.
For those porphyria patients not covered by the NAPS service, if they wish to remain attending Cambridge now that the porphyria centre has closed, they can be seen in the metabolic clinic with Dr Patrick Deegan. However, for those that do not feel this would be appropriate or would like to continue their care with Dr Stein, patients can choose to be referred to King’s College Hospital. Patients would need to ask their GP for a referral to:
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 email@example.com.
We usually have two open meetings / 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 event is our Autumn Conference and AGM, which will be held on 6 September 2014 in Salford – an agenda and directions will be posted here shortly.
We have extended the timings of our Autumn Conference and (brief) AGM to run from 10:45am to 3:15pm. The meeting is free to attend and will be held in the Mayo Building at Salford Royal Hospital.
The programme will start with registration and refreshments at 10:45am, for an 11:00am start. An hour-long lunch break will also be provided to allow ample opportunities to informally meet and talk with other porphyria patients and their families. The meeting will finish with a final refreshment break at around 3:00 to 3:15pm.
There will be a clinical talk from Professor Felicity Stewart, a talk on living with EPP pain from a mother and her son, a talk from a patient with AIP, as well as plenty of formal and informal opportunities to ask questions with clinicians or to talk with other people with porphyria. In addition, Joanne Osman and Liz Gaskell from the Salford Royal Photobiology Unit will be available over the lunchtime period to talk to members and advise on sun protection.
Please let us know if you would like to attend: firstname.lastname@example.org or 0300 30 200 30.
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.