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Karen has been involved with the BPA since it's inception. She has Variegate Porphyria. The association was formed by patients and their families because little was known about this group of conditions, and once diagnosed, patients were often left isolated and in limbo. Over the years the association has joined forces with specialists, pharaceutical companies, and other worldwide associations and charities to help understand the porphyrias, and to support patients. In general the main types of Porphyria are inherited conditions, causing various symptoms dependent on which type a patient has. There are no cures.  Sometimes the acute porphyrias can be life limiting. Some patients suffer constant pain, worse when in attack, but often between attacks too. More information can be found on the website: www.porphyria.org.uk.

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