AlphaNet Canada
Improving the lives of Alphas
Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition – it is passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age.
Program Manager Mike Benn to Retire
Program Manager Mike Benn to Retire
After 15 years with AlphaNet and AlphaNet Canada, Mike Benn will be retiring from his role as Program Manager on April 30th. Mike played a key role in establishing the AlphaNet program in Canada, and we thank him for his many years of dedicated service and valuable contributions to the organization.
Alpha-1 patients
- Caroline, OntarioSince being diagnosed in 2021, Caroline appreciates that her AlphaNet Canada Coordinator is only a phone call away. She values the regular calls from her AlphaNet Coordinator, who monitors her disease progression and offers support.
- Bob & Jean, SaskatchewanAlpha-1 antitrypsin deficiency is hereditary. Although Bob and Jean are not symptomatic, carriers can pass the abnormal SERPINA1 gene to their children. If both parents are Alpha-1 carriers, their children have a 1 in 4 chance of inheriting Alpha-1.
- Shelly, Prince Edward IslandShelly was relieved to have access to treatment in 2024 and quickly learned how to self-infuse her augmentation therapy. The freedom of self-infusion allows Shelly to travel at her leisure and to schedule her infusions for her lifestyle. Shelly is grateful for her AlphaNet Coordinator's support and is reassured that she has an ally living with AATD.
- Rob & Susan, SaskatchewanIf you have a close family member, such as a parent or sibling, with alpha-1 antitrypsin deficiency, it is also essential to get screened. Rob has been a dedicated advocate for family screening and a leading figure in the Canadian Alpha-1 patient community since his diagnosis in 2017.
- Roy, OntarioRoy was diagnosed with AATD in 2011 and has remained dedicated to raising awareness about the condition for many years. He actively shares his personal experience by enrolling in alpha-1 patient registries and participating in patient surveys and focus groups. His contributions provide invaluable real-world evidence that supports ongoing alpha-1 research.
- Cameron Family, SaskatchewanFamily screening is crucial because alpha-1 antitrypsin deficiency is hereditary, and early detection can help manage the disease more effectively.
- Gary, Nova ScotiaGary was diagnosed with AATD in 2002 and tragically lost his sister to the disease in 2004. Since then, he has dedicated himself to raising awareness about AATD. As a Canadian Alpha-1 patient community leader, Gary is committed to promoting Alpha-1 clinical trials. He believes these trials offer hope for many patients and provide a vital opportunity for researchers to develop innovative treatments.
- Rob, SaskatchewanRob has been benefiting from augmentation therapy since his AATD was first diagnosed in 2017. However, after training with a nurse in 2024, Rob is now confident about infusing himself, and his patient support program helps ensure he has all the supplies he needs.
- Kent, OntarioKent credits augmentation therapy with maintaining his lung function for over six years. He is thrilled to know that there is now national access to augmentation therapy through Canadian Blood Services for all severely affected AATD patients who require treatment.
- Susan, SaskatchewanSusan was diagnosed with alpha-1 antitrypsin deficiency in 2017 and has since been dedicated to raising awareness about the condition. She advocates for equitable access to treatment for all Canadians living with a rare disease.
How does AlphaNet
Canada help Alphas?
By staying connected and subscribing to AlphaNet Canada, patients play a vital role in helping us identify the number of Canadians diagnosed with Alpha-1 and better understand your specific needs. This information empowers us to advocate more effectively on your behalf, especially when engaging with provincial and territorial governments to secure access to new and innovative therapies for Alpha-1 patients across Canada.
Through our tailored disease management services, we offer patients a comprehensive range of resources, including essential information, education,
and personalized support. Our goal is to empower and guide them every step of the way on their healthcare journey.
We actively engage with physicians and the broader medical community, serving as a vital resource for up-to-date information and fostering collaboration to improve patient care.
We offer comprehensive health system navigation, empowering patients to make informed decisions about their treatment options and receive the best possible care.
FAQ
Trusted Partners
