The Alpha-1 Community is incredibly fortunate to have so many partners providing support and information, as well as advocating to find a cure for this rare disease in Canada and abroad. Core organizations leading the efforts in patient care and advocacy include:
A national not-for-profit organization that offers a number of educational programs across Canada; patient information and support services for Alphas, their families and health care professionals.
A confidential database where Canadian researchers store information shared with them by patients with Alpha-1 Antitrypsin Deficiency. The registry also keeps patients up to date on research advances, treatment options and opportunities to participate in clinical trials. For further information please visit www.alpha1canadianregistry.com
Provides health management coordination for Alphas both enrolled in the Prolastin Direct program and information to those who may be considering the program. The AlphaNet Disease Management and Prevention Program has resulted in high augmentation therapy compliance with fewer exacerbation’s, unscheduled doctor visits and hospitalizations. For further information please visit www.alphanetcanada.ca
Promotes research and the development of new therapies for improving the quality of life for those diagnosed with Alpha-1. It collaborates with investigators throughout the United States and Europe, working closely with the National Institutes of Health (NIH), the Food and Drug Administration (FDA), individuals affected by Alpha-1, and the pharmaceutical industry, to expedite the development of improved therapies. The Alpha-1 Foundation provides information and support services for Alphas throughout the United States. For further information, please visit www.alpha1.org
Coordinates a collaborative global network of Alpha-1 organizations and patients to increase awareness, detection and access to care for Alphas around the world. For further information, please visit www.alpha-1global.org