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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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.
Tegsedi is now approved in Canada
Akcea and Ionis Announce Approval of Tegsedi (inotersen injection) in Canada. To learn more, please visit the website.
Onpattro is approved in the US
FDA Approves Alnylam’s Onpattro for Polyneuropathy of hATTR Amyloidosis. To learn more, please visit the website.
New Genetic Testing Program for hATTR patients
Akcea and Ambry Genetics to Launch hATTR Compass, a Genetic Testing Program for Patients with Suspected Hereditary ATTR Amyloidosis. To learn more, please visit the website.
Report on hATTR treatments shared at ICER meeting
A report on treatments for hereditary transthyretin-related (hATTR) amyloidosis by the Institute for Clinical and Economic Review (ICER) was reviewed by the Midwest Comparative Effectiveness Public Advisory Council (Midwest CEPAC) at the ICER meeting held in Chicago...
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