The Canadian Pemphigus and Pemphigoid Foundation (CPPF) is committed to making a difference in the lives of Canadians both locally and nationally. At the local level, we are deeply committed to establishing and helping to sustain as many support groups across the country as possible. We are pleased to report that in addition to our Toronto and Ottawa groups, we now have groups in Montreal and the Kitchener/Waterloo region. We have also started actively searching for group leaders in Calgary and Edmonton.
Our support group program also known as the Circle of Friends Program – focuses on ensuring that patients and their families and friends obtain the emotional support and information that they need. Most meetings have a local expert (e.g., dermatologists, nutritionists, wound care specialists, etc.) speak so that patients can get the latest information and expert advice on treating and managing their condition. Meetings also have an open forum where patients and their families and friends can share their experiences with one another.
Visit the Foundation?s website at www.pemphigus.ca for information about upcoming meetings or for information on a support group near you.
The Foundation is also pleased to have become an affiliate of two very important organizations: the Canadian Skin Patient Alliance and the Canadian Organization for Rare Disorders.
The Canadian Skin Patient Alliance (CSPA) is new organization comprised of individuals and patient groups who are suffering from one or more skin conditions. Established in 2007, the CSPA is a patient-centred organization serving to enhance care, promote skin health and find cures for Canadians with skin conditions. Two priorities that are of great interest to us are increasing the number of dermatologists in Canada and working for additional training for non-dermatology physicians and nurses. By working with the CSPA on this issue and others, we hope to make a difference in the lives of not only our patients but all Canadians. Please consider becoming a member (it’s free!) and support their efforts through your participation. For more information visit their website at www.skinpatientalliance.ca.
The Canadian Organization for Rare Disorders (CORD) is Canada’s national network for organizations representing individuals with rare disorders like ours. It provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. A rare or orphan disease is a disease that affects fewer than one in 2,000 individuals. Currently, there are more than 7,000 rare disorders affecting over 3 million Canadians. The number of Canadians with pemphigus or pemphigoid is currently unknown. Our best estimate is that there may be as many as 4,000 of Canadians who suffer from these diseases. Most of our treatments are off-label (i.e., drugs being used to treat our illnesses were developed for other purposes). For example, CellCept and Imuran two common drug therapies were developed and are approved for transplant patients. For individuals suffering from a rare disorder, improving access to medications is critical and CORD and its affiliate members are working on making changes in this area. For more information about CORD, visit their website at www.raredisorders.ca.
Visit our Canadian News webpage for regular updates on how these two very important Canadian organizations are doing and what you can do to help.
If there are other issues that you would like us to investigate, visit our website at www.pemphgius.ca, or drop us a line at support@pemphigus.ca.
