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
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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
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....
Alnylam Unveils Resources to ‘Bridge the Gap’ in Knowledge of Hereditary ATTR (hATTR) Amyloidosis Among Families at Risk
Alnylam Unveils Resources to ‘Bridge the Gap’ in Knowledge of Hereditary ATTR (hATTR) Amyloidosis Among Families at Risk. Click here to find out 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....
Mark Your Calendars! Rare Disease Day is February 28, 2019
Rare Disease Day is held on the last day of February each year to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. To learn more, or to get involved, please visit their...
Did you know that March is Amyloidosis Month?
The Amyloidosis Foundation is working to increase awareness of all forms of amyloidosis, declaring March as Amyloidosis Awareness Month. To learn more, or to get involved, please visit the website.
Tegsedi is now approved in Canada
Akcea and Ionis Announce Approval of Tegsedi (inotersen injection) in Canada. To learn more, please visit the website.
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