Welcome to the Alpha-1 Canada page.
Please visit our web site at www.alpha1canada.ca to learn about Alpha-1 antitrypsin deficiency and the resources available to Canadians.
If you live in Canada – and even if you don’t – please check out our many resources like our blog and newsletter that keep you informed about the latest research on Alpha-1; our support groups where you can meet others who know what you are going through; and our on-line and in person educational events.
Alpha-1 Canada’s mission is to provide information, education and support to Canadians affected by alpha-1 antitrypsin deficiency; inform and educate the medical community about alpha-1 antitrypsin deficiency; and generate broad awareness about this rare hereditary disease.
We are an inspired, patient and healthcare focused, national, charitable organization. Our Board of Directors and members of our well-regarded Medical Advisory Board represent all regions of this great country. They and our staff are dedicated and deeply committed to improving the quality of life for Alpha-1 patients and of course to finding a cure that will eliminate this disease and the hardships it causes.
Your involvement in Alpha-1 Canada and this global project is of great value to us and will also be of great value to you. Welcome to the Alpha-1 Community.
Angela Diano
Executive Director, Alpha-1 Canada
Patient Representative:
Angela Diano, Executive Director, Alpha-1 Canada
gary.murphy@alpha1canada.ca
www.alpha1canada.ca
Jessica Cool
info@alpha1canda.ca
Physician Representative:
Lung
Dr. Ken Chapman
Alpha-1 Canadian Registry
ken.chapman.airways@gmail.com
Liver
Dr. David Wong
UHN
dave.wong@uhn.ca
Are free Alpha-1 tests available? Yes
Are Alpha-1 serum level tests available? Yes
Are Alpha-1 genotyping tests available? Yes
Are Alpha-1 phenotyping or pi-typing tests available? Yes
Is augmentation therapy available? Yes
Which augmentation therapy products are available? Prolastin-C
How is augmentation therapy administered? Administered by a medical professional in a home setting or community infusion clinic
How is augmentation therapy reimbursed? Public health insurance, private health insurance, partially reimbursed, or not reimbursed
Are Alpha-1 specialists or care treatment centers available? Yes
Is supplemental oxygen available? Yes
Are respiratory medications available? Yes
Is pulmonary rehabilitation available? Yes
Is Genetic counseling available by a trained counselor? Yes
Does your country have a patient registered charity or NGO (non-government organisation)? Yes
The following imaging tests are available to Alpha-1 patients: CT Imaging, liver ultrasounds, liver fibroscan, liver biopsy
Does your country have a national Alpha-1 registry?: Yes
EDUCATIONAL
HEALTHCARE PROVIDER
RESEARCH
ADVOCACY
L’Alpha-1 Foundation met à vorte disposition en langue française les informations suivantes:
AlphaNet’s Skinny Little Reference Guides sont disponibles en allemand, espagnol, portugais et français via la liaison suivante: