Advocacy
Learn how we work to amplify the voices of Alpha-1 patients across Canada, advocate for their care, and collaborate with national and international partners to promote awareness.
AlphaNet Canada is committed to amplifying the patient community’s voice as we continue to advocate for patient care at the local, provincial, territorial, and federal levels. Our advocacy efforts include working with the country’s health technology agencies, Canada’s Drug Agency (CDA) and the Institut national d’excellence en santé et services sociaux (INESSS), along with the country’s blood operators, Canadian Blood Services and Héma-Québec.
Furthermore, we collaborate with numerous national stakeholders to ensure the needs of Canadian Alpha-1 patients are represented. These stakeholders include the Canadian Thoracic Society (CTS), Canadian Lung Association (CLA), Canadian Society of Respiratory Therapists (CSRT), Canadian Association of Gastroenterology (CAG), Canadian Organization for Rare Disorders (CORD), and the Network of Rare Blood Disorder Organizations (NRBDO).
Our advocacy efforts across Canada inform our participation in international advocacy efforts to promote global Alpha-1 awareness through our relationships with the Alpha-1 Foundation, the European Alpha-1 Research Collaboration (EARCO), the Alpha-1 Europe Alliance, and the Plasma Protein Therapeutics Association (PPTA). Collaboration and sharing best practices are key components of our advocacy strategy.
