About the Campaign – Access To Approved Therapies

Hereditary ATTR (hATTR) amyloidosis is a rare, genetic disease which can lead to significant disability and death. Early and accurate diagnosis is important due to the rapid, natural progression of hATTR amyloidosis, however, patients can experience a delay in diagnosis of up to 8 years given the complexity of the disease.

For the first time, new therapies have been developed that treat the underlying cause of hATTR amyloidosis. Despite being approved by Health Canada, two new treatments – Tegsedi (inotersen) and Onpattro (patisiran) – are not yet accessible through publicly funded drug plans for patients who could benefit.

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.

We want to hear from you!!

We hope you will join our advocacy efforts by using the tools on this website. Please reach out to Hereditary Amyloidosis Canada (HAC) with any questions about our work, to share your hATTR amyloidosis stories, or to tell us how we can make this site even better.

Share via
Copy link
Powered by Social Snap