The autoimmune diseases of pemphigoid and pemphigus are so rare that there are no Canadian statistics available that show how many people are living with these diseases or that measure the diagnostic period between presentation and diagnosis. Incorrect diagnoses and prolonged periods of suffering during the diagnostic process are all too common in the case of rare skin disorders such as pemphigoid and pemphigus. From media reports, it appears that Mr. Flaherty's period of illness before diagnosis and treatment was substantial.
European data indicates that the incidence rate of bullous pemphigoid - the variant that the Globe and Mail has reported in the case of Mr. Flaherty - can range from seven cases per million per year to 43 million per year, depending on the country.
In 2008 patients and family members of patients with pemphigoid and pemphigus established the Canadian Pemphigus and Pemphigoid Foundation (CPPF), a non-profit, charitable organization registered with Revenue Canada. The CPPF is committed to helping Canadians with these auto-immune illnesses achieve a better quality of life and to educate patients, caregivers and healthcare professionals.. The Foundation operates across Canada and patient groups meet regularly to provide support, share experiences and confer with health care professionals in a supportive and safe environment.
CPPF renews membership with "Imagine Canada's Ethical Code Program" (posted December 2012)