Education - Support - Research
Registered Charity No. : 1089609

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Autumn Conference and AGM 2008

We are having a half-day conference  in Liverpool, on 27th September.
It will include talks by Dr Felicity Stewart of Salford Royal (Hope) Hospital,
and by  Dr Helen Murphy, who is doing research into AIP.
For more details, see our news page.

New Leaflets

We have produced five leaflets, on different aspects of porphyria, and an introduction to the British Porphyria Association. One covers the use of drugs with acute porphyria.

More information is given, and they can be downloaded from our news page.

You can also download our latest newsletter from the same place.

What is Porphyria? It is actually 7 related disorders. A special protein known as an enzyme completes each step on the pathway to produce haem (for red blood pigment). In each type of porphyria, a specific enzyme is deficient and this is why porphyrins accumulate causing severe medical problems. (For more information, see our Facts pages.)

Porphyria is pronounced similarly all over Europe, but the spelling varies considerably:  porfiria, porfyrier, porfyria and porphiria.

The British Porphyria Association was established in 1999 by a group of patients and relatives of patients. They had experienced isolation and difficulties caused by their diagnosis, but found a general lack of understanding and assistance available, as it is such a rare condition.


The group was formed with the help of Professors Tim Cox, Tim Peters and George Elder, Linda Partridge from Contact a Family, Leslie Green from Climb and Orphan Europe.

The Association's aim is to reach out to as many people as possible; patients, doctors, hospitals and research establishments in order to improve the understanding of this condition. Early diagnosis is vital if we are 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. Join the list.
• 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: 1) meetings, 2) Counseling, 3) Dissemination of advice & information
• To provide patients and GP's with details of doctors specializing in Porphyria
• To maintain contact with other Porphyria support groups in other countries to share information and recent developments in research and treatments.
• To organize fund raising events and sponsorship to enable adequate resources for continued support, advice, information, and to aid research and education.

British Porphyria Association


Help-line and general Tel: 01474 369 231

email: helpline@porphyria.org.uk

or: secretary@porphyria.org.uk

for comments on these web pages: webmaster@porphyria.org.uk

 



Please use the British Porphyria Association's web purchasing portal. You just buy from the normal web sites as usual, at the normal prices, but BPA gets the commission. It leads to about 80 web purchasing sites, including Amazon, M&S, Tescos, Comet, CD-wow, and Travel select, Cotton traders, Carphone warehouse, Teleflorist....