Hello, my name is Anne Marie Carr, Founder and CEO of Hereditary Amyloidosis Canada, with a mission to serve those with Transthyretin Amyloidosis in Canada (TAC). 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.
hATTR amyloidosis is estimated to affect 50,000 people worldwide, with more than 130 different TTR gene mutations identified.
hATTR amyloidosis runs in families – A person only needs to inherit one copy of the affected gene from one parent in order to develop hATTR amyloidosis.
It can often take more than 4 years and visits with 5 or more doctors across different specialties to receive an accurate diagnosis of hATTR amyloidosis.
New therapies that address the underlying cause of hATTR amyloidosis are providing hope for people living with the disease.
Hereditary Amyloidosis Canada (HAC) and Regroupement québécois des maladies orphelines (RQMO) are pleased to announce the launch of: Unfolding Transthyretin Amyloidosis: The Akcea Canada Young Investigator Grants Program. To learn about eligibility...
Thank you to all who were able to join us on May 27 for Using Advocacy Tools & #stophATTRnow Campaign webinar. In case you missed it, you can listen to a recording of the webinar...
Registration is now open for our third and final advocacy webinar - Using Advocacy Tools & #stophATTRnow Campaign -taking place on May 27, 2020 from 8:00p.m. – 9:00p.m. EDT Amyloidosis patients, families and caregivers will learn how to will learn how to use the...
Thank you to all who were able to join us on May 20 for Telling Your Personal Story & How Drugs Are Funded in Canada webinar. In case you missed it, you can listen to a recording of the webinar here:...
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...
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...
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