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

Save the date!

On November 16, in Toronto, Hereditary Amyloidosis Canada (HAC) will host its first-ever workshop for Canadian hATTR patients, families and caregivers to introduce them to the fundamentals of advocacy. Participants will gain an understanding of how they can become...

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

Access to Treatment in Québec – Have Your Say

L’INESSS in Québec is evaluating inotersen (Tegsedi – Akcea Therapeutics Canada) a treatment for adults with hATTR amyloidosis polyneuropathy. L’INESSS does this evaluation to determine whether to recommend the drug for reimbursement by the Québec government....

read more

HAC Needs YOU! Tegsedi Survey Closes March 1

If you are a person living with hATTR amyloidosis, or a caregiver for a person living with hATTR amyloidosis, we would greatly appreciate it if you could take 15 minutes to complete a questionnaire regarding Tegsedi, a medication recently approved by Health Canada....

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 amyloidosis, delivered to your inbox.

14 + 8 =

*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.