Support for Canadians with Porphyria
For over twenty years Canadians have received information, knowledge, understanding, and assistance from the Canadian Association for Porphyria. In 2010, the Canadian Association for Porphyria ceased to exist (please see the information below). In order to continue their work a small group of volunteers based in Edmonton, Alberta, Canada created the Alberta Porphyria Society.
Our aim is to continue the mission of the Canadian Association for Porphyria - "to improve the quality of life for people affected by porphyria" and to
● support improvements in the health and well-being of individuals and families affected by porphyria
● promote the development of care models for individuals with porphyria
● promote awareness of porphyria amongst health care workers and community members
● cultivate support for research on behalf of individuals affected by porphyria.
Dear Visitors,
On behalf of the Canadian Association for Porphyria (CAP), I would like to inform you, with deepest regrets, that after April 30, 2009, due to lack of funding, we are forced to minimize our organization to its smallest state. We will be leaving a message on our answering machine informing callers of the hours and dates the office will be open; and you will be able to reach us by mail, but there will be no email or toll free telephone number. We are very sorry.
The Canadian Association for Porphyria is hoping that, upon hearing this news, a porphyria group will start up somewhere else in Canada. “The newly formed group could then take CAP’s national charitable registration and they would not have to go through the time consuming and costly re-registration.”
I would like to extend a warm thank you to the many volunteers, members, donors, students, staff and friends who supported CAP over the past 20 years. Your commitment and dedication has made a difference and truly improved conditions for people with porphyria in Canada; but we know there is still a long way to go.
To all those people diagnosed with porphyria and their families, I encourage you to believe in yourself and your symptoms and find a doctor who understands porphyria or is willing to learn about this rare blood disease.
Sincerely and with friendship,
Lois J. Aitken
Founder, President & Executive Director
“Sometimes a door has to close in order to let another door open”
On behalf of the Canadian Association for Porphyria (CAP), I would like to inform you, with deepest regrets, that after April 30, 2009, due to lack of funding, we are forced to minimize our organization to its smallest state. We will be leaving a message on our answering machine informing callers of the hours and dates the office will be open; and you will be able to reach us by mail, but there will be no email or toll free telephone number. We are very sorry.
The Canadian Association for Porphyria is hoping that, upon hearing this news, a porphyria group will start up somewhere else in Canada. “The newly formed group could then take CAP’s national charitable registration and they would not have to go through the time consuming and costly re-registration.”
I would like to extend a warm thank you to the many volunteers, members, donors, students, staff and friends who supported CAP over the past 20 years. Your commitment and dedication has made a difference and truly improved conditions for people with porphyria in Canada; but we know there is still a long way to go.
To all those people diagnosed with porphyria and their families, I encourage you to believe in yourself and your symptoms and find a doctor who understands porphyria or is willing to learn about this rare blood disease.
Sincerely and with friendship,
Lois J. Aitken
Founder, President & Executive Director
“Sometimes a door has to close in order to let another door open”
