Register for the ATTR Patient Summit
Join us for information sharing and networking at the first-ever patient focused summit in Toronto, April 28-30.
Registration is free, but space is limited.
Hello, my name is Anne Marie Carr, Founder and CEO of Transthyretin Amyloidosis Canada (TAC), formerly Hereditary Amyloidosis Canada. Our mission at TAC is to serve those with transthyretin amyloidosis in Canada. I live with Hereditary Transthyretin Amyloidosis (hATTR). I currently live in Hagersville, Ontario with Mervyn, my husband. I have a son and am a grandmother to lovely Abigail.
Like many of you, the road to diagnosis has been long and confusing. When my first symptoms appeared such as breathing problems, they were considered asthma caused by environmental factors. My weight loss and chronic diarrhea were attributed to viruses that were circulating at the time. I remember that tingling sensation in my fingertips, and I had trouble opening a bottle of water or buttoning my clothes. I was finally diagnosed with hATTR in September 2015.
To all of you who suffer from ATTR, please tell yourself that I know that there are days when you feel alone, and the symptoms are simply intolerable.
Know, however, that YOU ARE NOT ALONE.
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Learn what patients and their supporters have to say about living with with Hereditary (hATTR) amyloidosis.
Latest Updates
United Kingdom endorses the use of inotersen (Tegsedi) to treat patients with hATTR
On April 16, 2019 the National Institute for Health and Care Excellence (NICE) releases its final guidance recommending inotersen (Tegsedi) be placed on England’s National Health Service for the treatment of nerve damage from hereditary transthyretin-mediated...
Access to Treatment in Québec – Have Your Say
L’INESSS in Québec is evaluating inotersen (Tegsedi – Akcea Therapeutics Canada) a treatment for adults with hATTR amyloidosis polyneuropathy. L’INESSS does this evaluation to determine whether to recommend the drug for reimbursement by the Québec government....
Alnylam Unveils Resources to ‘Bridge the Gap’ in Knowledge of Hereditary ATTR (hATTR) Amyloidosis Among Families at Risk
Alnylam Unveils Resources to ‘Bridge the Gap’ in Knowledge of Hereditary ATTR (hATTR) Amyloidosis Among Families at Risk. Click here to find out more.
HAC Needs YOU! Tegsedi Survey Closes March 1
If you are a person living with hATTR amyloidosis, or a caregiver for a person living with hATTR amyloidosis, we would greatly appreciate it if you could take 15 minutes to complete a questionnaire regarding Tegsedi, a medication recently approved by Health Canada....
Mark Your Calendars! Rare Disease Day is February 28, 2019
Rare Disease Day is held on the last day of February each year to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. To learn more, or to get involved, please visit their...
Did you know that March is Amyloidosis Month?
The Amyloidosis Foundation is working to increase awareness of all forms of amyloidosis, declaring March as Amyloidosis Awareness Month. To learn more, or to get involved, please visit the website.
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