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 CEO of Hereditary Amyloidosis Canada, and 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 hATTR, 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. 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

2019 Biennial ATTR (Familial) Meeting

From October 25-27, 2019, I was able to attend this meeting in Chicago, arranged by Amyloidosis Support Groups. The goal of the conference was to inform and share information about amyloidosis, current and future treatments, clinical trials and research updates....

read more

November 16 webinar recording now available!

Thank you to all who were able to join us on November 16 for the Unfolding hATTR: Cardiac Amyloidosis presentation with Dr. Diego Delgado. In case you missed it, you can listen to a recording of the webinar here: If you have any future webinar topic...

read more

NOVEMBER 16 WEBINAR – You’re Invited!

Unfolding hATTR: Update on Cardiac Amyloidosis Are you or a loved one living with hereditary ATTR (hATTR) amyloidosis? On behalf of Hereditary Amyloidosis Canada, we’d like to invite you to our first webinar for Canadian patients, caregivers and family members to help...

read more

Onpattro™ (patisiran) is now approved in Canada

Alnylam Pharmaceuticals, Inc. Announce Health Canada’s Approval of Onpattro™ (patisiran) for the treatment of polyneuropathy in adult patients with hereditary transthyretin-mediated (hATTR) amyloidosis. To learn more, please...

read more

Like us on Facebook

Visit our Facebook page here.

Like us on Twitter

Visit our Twitter page here.

Find other ways to connect

Visit our Contact Us page here.

Sign up to Stay in Touch!

Get important updates, including Canadian-focused news and information about hATTR and wtATTR, delivered to your inbox.

6 + 6 =

*By submitting this form, you are consenting to receive emails from Hereditary Amyloidosis Canada. You can revoke your consent to receive emails at any time by using the unsubscribe link, found at the bottom of every email.