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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.

 

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Porphyria patients at the International Patient Day in Lucerne, Switzerland.  

 

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 arrangements in place to cover the period to March 2015, when a more permanent solution will be put in place. NHS England will be working closely with patients and the BPA to ensure that the future of the service will work well for patients. Patients covered by the NAPS sevice, should have received a questionnaire about the service.  The deadline for replies has been extended to mid-December.

For more information, please view this NHS England briefing, which has also been 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
Denmark Hill
SE5 9RS

For any queries, please do not hesitate to contact our helpline on 0300 30 200 30 or helpline@porphyria.org.uk.

 

Administrator for BPA

The British Porphyria Association are planning to employ a part-time administrator. If you are interested in applying for this post, see our Other Events page

 

Open meetings

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.

 

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.