For over twenty years Canadians received information, knowledge, understanding, and assistance from the Canadian Association for Porphyria. In 2010, the Canadian Association for Porphyria ceased to exist. In order to continue their work, a small group of supportive people have been meeting in Edmonton, Alberta to start a local, not-for-profit organization. We are following, slowly but surely, in the footsteps of Lois Aitken, former organizer and president of the Canadian Association for Porphyria.
The Alberta Porphyria Society (APS) formally emerged at their initial meeting on Saturday, October 15th, 2011 in Edmonton, Alberta, Canada. The interim board and members brainstormed about ways to fulfill the organization's goals and set the agenda for a general meeting in the new year. Of course, stories about living with porphyria were shared by those around the table.
Members of the Alberta Porphyria Society (APS) look forward to providing support and information to those with questions concerning this little-known disease. If you would like more information, please contact us.
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”
