The Hereditary Amyloidosis Canada (HAC) website is owned by Anne Marie Carr
, an hATTR amyloidosis patient. She was diagnosed with hATTR amyloidosis in September 2015 at the age of 57. The inspiration for this website was borne out of her own journey of living with hATTR amyloidosis and the lack of community, support groups and information and resources available to her and her family at that time.
She believe that with the help of HAC website patient can have direct access to information about the disease, the pathway to diagnosis and treatment, and up-to-date clinical trial information. With this, we can improve the outcomes of this very real and often fatal disease. We can and must be our own advocates to ensure we get what we need to live our best lives.
Hereditary Amyloidosis Canada’s HAC mission is to provide support, information, resources, and advocacy for people living with hATTR amyloidosis here in Canada, and all around the world, whether a patient, a caregiver, a friend, family member or healthcare provider.