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New Organization Established in Canada to help Local Patients and their Families

I am delighted to inform you that there is now an organization in Canada to help patients and caregivers better cope with these diseases. The Canadian Pemphigus and Pemphigoid Foundation based in Ottawa, Ontario was incorporated as a not-for-profit organization in August 2008 after over a year of work and effort by a small group of committed patients and caregivers.

“I know how difficult it was for me in the beginning,” says Dan Goodwill, Chair of the new Foundation and a IPPF Board Member and Local Support Group leader. “Having some place to go where you can talk to others who are going through what you are is extremely helpful in the healing process. We are committed to keeping patients and their families and friends central to our work.”

The idea began in July 2007 at the IPPF’s annual conference held in Toronto, Ontario. {quotes}Our vision is to see that the lives of all Canadians suffering from these diseases are improved and that we contribute in a meaningful way to the worldwide network that the IPPF is creating.{/quotes}

Already the Foundation has active support groups (“Circle of Friends”) in Toronto and Ottawa with another starting in Montreal in early 2009. Next stops are Calgary, Edmonton and the Atlantic region.

If you are interested in becoming a leader in your area, we encourage you to contact us. We can help you find speakers, promote your event, and provide educational materials. You will also become part of a network of support group leaders across the country.

The website (www. pemphigus.ca) will be providing relevant information to Canadians associated with these diseases. Resources permitting, educational materials will be made available and events will be held. Efforts will be made to reach out to the broader healthcare community so that patients are diagnosed earlier and effective treatment strategies readily available.

We are also thankful for the wonderful support the IPPF has given us. Soon there will be an online forum for Canadians on the IPPF website and articles with updates on our activities in this publication. IPPF leadership paves the way for all of us to benefit as well as help contribute to finding a cure.

On a personal note, I cannot tell you how happy I am that Canadians have somewhere local to go for help and assistance. My first years with this disease were extremely lonely and frustrating. Now, we have a network of Canadians who are helping others “get through it” and I feel a great deal of hope that the future will be better for all of us.

Posted in Issue 54 - Fall 2008

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