Thanks to all our Volunteers! (posted April 15, 2013)

April 21-27 is National Volunteer Week!  The CPPF would like to thank all its volunteers especially our Support Group Leaders across the country!  Karen  and Renay in Toronto, Maria in Montreal, Victoria in Ottawa, and Jeannie in Calgary.  And of course a huge thank you goes to our dedicated Board of Directors who both guide and support the implementation of our programs  and services. 

Submits Evidence to Ontario Ministry of Health for Coverage of Rituximab

In the fall of 2012 the CPPF responded to a call for Patient Evidence Submissions to the Ontario Public Drug Programs (OPDP) of the Ontario Ministry of Health and Long Term Care to assist in their review of the drug Rituximab for treatment of Pemphigus Vulgaris (PV).  A number of patients contacted by the CPPF were able to summarize their experiences with Rituximab, which were then submitted.  A positive review from the OPDP may allow this drug to be accessible to a greater number of PV patients, due to its high cost.  A decision from the Ministry is anticipated in the spring of 2013.

Bullous Pemphigoid - What is this disease that Jim Flaherty has been diagnosed with?  (CPPF Press Release. January 31 2013. CNW)

It has been reported that Jim Flaherty, Finance Minister and MP for Whitby-Oshawa has been diagnosed with bullous pemphigoid. Pemphigoid is a rare blistering skin disorder that can produce lesions primarily in the arms, thighs and mid- section. It is very serious and requires treatment, generally with the extended use of significant dosages of the steroid medication, prednisone, which itself has significant long term side-effects.

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)

The Canadian Pempihgus and Pemphigoid Foundation places a high value on our relationship with you, our donors. Without your support we would not be able to achieve our mission to improve the quality of life of Canadians suffering from pemphigus or pemphiogid. We thank you for your commitment to us. We believe that transparency and accountability are essential to our success. With this in mind, we have recently joined Imagine Canada’s Ethical Code Program. To learn more about this program, visit our "How Can I Help?" webpage.