British
Porphyria
Association

Education - Support - Research
Registered Charity No. : 1089609

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The British Porphyria
Association

 

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: