Given where new hATTR amyloidosis treatment options are currently at within the reimbursement process, there’s never been a more important time for advocacy.
First Webinar
Recording and Slides Now Available
Second Webinar
Recording and Slides Now Available
Third Webinar
Recording and Slides Now Available
Hello, my name is Anne Marie Carr, Founder and Executive Director of Hereditary Amyloidosis Canada and I am living with hATTR amyloidosis. I’m 61 years old and I currently live in Ancaster, Ontario with my husband Mervyn. I am a mother of one son and a grandmother to my six year old granddaughter.
Like many of you, I struggled for a diagnosis. Initially my symptoms, such as breathing problems, were considered asthmatic caused by environmental factors. My chronic weight-loss and diarrhea were attributed to viruses which were going around at the time. I remember getting the sensation of pins and needles in my finger tips and I found it difficult to open a bottle of water or do up buttons on clothing. Eventually, I was diagnosed with hATTR amyloidosis in September 2015.
To all of the other hATTR patients are out there, I know there are days when you may feel alone and the symptoms are too much to bear. But you are NOT alone. Watch the video below to learn more about my story.
Learn what patients and their supporters have to say about living with with Hereditary (hATTR) amyloidosis.
hATTR Facts
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.
Latest Updates
May 27 Webinar Recording Now Available!
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...
Final Advocacy Webinar May 27 2020
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...
May 20 Webinar Recording Now Available!
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:...
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)
Hereditary Amyloidosis Canada (HAC) 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...
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