British Porphyria Association

BPA are hoping to reach out to as many people as possible in order to improve the understanding of this condition

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Aims:

To reach out to as many people as possible; patients, doctors, hospitals and research establishments in order to improve the understanding of this condition.

Services provided:

Early diagnosis is vital to improve the quality of life for those affected by it. Some of the activities underway and in the pipeline are:

  • Distribution of newsletters twice a year to all people on our database, including patients, doctors, health authorities and other interested parties
  • Distribution of patient booklets / drug lists
  • Distribution of posters to hospitals
  • Distribution of articles on all types of Porphyria for use by those with the condition
  • Provision of support through meetings, counselling, and the dissemination of advice and information
  • Provide patients and GP’s with details of doctors specialising in Porphyria
  • Maintain contact with other Porphyria support groups in other countries to share information and recent developments in research and treatments
  • Organise fundraising events and sponsorship to enable adequate resources for continued support, advice, information, and to aid research and education.

Additional information:

Porphyria is a fairly uncommon condition.  It is a rare hereditary disorder of haemoglobin metabolism causing mental disturbance, extreme sensitivity to light and excretion of dark pigments in the urine.

Address

136 Devonshire Rd
Durham City
DH1 2BL

Website: http://www.porphyria.org.uk/
Email: helpline@porphyria.org.uk
Helpline number: 0300 30 200 30

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