If you or anyone you know has alpha-1 antitrypsin (AAT) deficiency-associated liver disease (AATLD), there are dedicated organizations, groups and other resources that foster education, support and research for this disease.
Alpha-1 Awareness (UK)
Alpha-1 Awareness is a charity formed to provide information and support to sufferers of alpha-1 antitrypsin deficiency. We maintain close links with experts and organizations associated with the condition. Our primary objective is to improve the understanding of Alpha-1 in both patients and medical professionals, as well as to provide support for Alphas, their caregivers and families.
Alpha-1 Antitrypsin Deficiency Canada Inc. (Alpha-1 Canada) is a national not-for-profit organization committed to advocating on behalf of Canadians affected by Alpha-1 Antitrypsin Deficiency, providing education to patients and the healthcare community to increase awareness and testing for this genetic disease.
Alpha-1 Association of Australia
The Alpha-1 Association of Australia (AAA) is a non-profit Health Promotion Charity endorsed as such by the Australian Taxation Office. The AAA was established following recognition of the absence of a central body of information and contacts for those affected by and working with alpha-1 antitrypsin deficiency.
Canadian Organization for Rare Disorders (CORD)
Canadian Organization for Rare Disorders (CORD) is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.
Rare Disease Foundation (RDF)
The Rare Disease Foundation’s mission is to connect and serve communities of patients, caregivers, health care providers, researchers & supporters to transform the lives of those living with rare disease. The Foundation is focused on linking basic science and clinical practice to increase the efficiency of rare disease research. This model is called Translational Care. This model drives patient based, treatment focused research projects from disease characterization to treatment with greater efficiency. By incorporating research, astute clinician observation and patient and family knowledge into the various stages of rare disease research we impact the speed of discovery and the way rare conditions are managed.