British Porphyria Association

136 Devonshire Road
Durham City
DH1 2BL

Tel: 01474 369 231
Web: www.porphyria.org.uk

The British Porphyria Association was established in 1998 by a group of patients and relatives of patients, who had experience the isolation and difficulties caused by their own diagnosis, but general lack of understanding and assistance available, in such a rare condition.

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 they 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 registered on their database, including patients doctors, health authorities and other interested parties.
• Distribution of patients leaflets/drug lists.
• Access to the Association via a web-site.
• Distribution of articles on all types of porphyria for use by those with the condition.

They aim to provide support through:

• Meetings.
• Dissemination of advice and information.
• To provide patients and GPs with details of doctors specialising in porphyria.
• To maintain contact with other porphyria support groups in other countries to share information and recent developments in research and treatments.
• To organise fund raising events and sponsorship to enable adequate resources for continued support, advice, information, and to aid research and education.