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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Second Advocacy Webinar May 20 2020
FREE WEBINAR: Are you or a loved one living with hATTR amyloidosis? Hereditary Amyloidosis Canada invites you to a free advocacy webinar for Canadian patients, caregivers and family members taking place on May 20, at 8:00 to 9:00p.m. EDT This interactive session, led...
May 13 Webinar Recording Now Available!
Thank you to all who were able to join us on May 13 for The Fundamentals of Advocacy webinar. In case you missed it, you can listen to a recording of the webinar here: https://www.youtube.com/watch?v=eDGy-bZrO7E If you would like a PDF copy of the...
Pan-Canadian Pricing Negotiations Successfully Completed for Tegsedi™ (inotersen)
TTR Amyloidosis Canada is pleased to learn that Akcea Therapeutics and the pan-Canadian Pharmaceutical Alliance (pCPA) successfully completed negotiations for Tegsedi™ (inotersen) by signing a Letter of Intent (LOI) on April 30, 2020. Tegsedi is...
Join Our First Advocacy Webinar on May 13!
FREE WEBINAR: Hereditary Amyloidosis Canada invites you to join us on May 13, at 8:00 to 9:00 p.m. EDT for the first in a series of three webinars focused on advocacy. During this free, interactive presentation, Canadian hATTR amyloidosis patients, families and...
MARK YOUR CALENDARS! hATTR Amyloidosis Advocacy Webinars
Hereditary Amyloidosis Canada invites you to a join us on May 13, May 20 and May 27, 2020 at 8:00 p.m. EDT for our first-ever interactive webinar series for Canadian hATTR patients, families and caregivers to learn about the fundamentals of advocacy and HAC’s recently...
Hereditary Amyloidosis Community Hopes Positive Funding Recommendations for New Treatments Lead to Swift Access for Patients
Ancaster, ON, March 2, 2020 -- TTR Amyloidosis Canada is joined by the Regroupement québécois des maladies orphelines (RQMO) in commending the Canadian Agency for Drugs and Technologies in Health (CADTH) and the Institut national d'excellence en santé et...
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