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
Pan-Canadian Pricing Negotiations Successfully Completed for Tegsedi™ (inotersen)
TTR Amyloidosis Canada 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...
Join Our First Advocacy Webinar on May 13!
FREE WEBINAR: Hereditary Amyloidosis Canada invites you to join us on May 13, at 8:00 to 9:00 p.m. EDT for the first in a series of three webinars focused on advocacy. During this free, interactive presentation, Canadian hATTR amyloidosis patients, families and...
MARK YOUR CALENDARS! hATTR Amyloidosis Advocacy Webinars
Hereditary Amyloidosis Canada invites you to a join us on May 13, May 20 and May 27, 2020 at 8:00 p.m. EDT for our first-ever interactive webinar series for Canadian hATTR patients, families and caregivers to learn about the fundamentals of advocacy and HAC’s recently...
Hereditary Amyloidosis Community Hopes Positive Funding Recommendations for New Treatments Lead to Swift Access for Patients
Ancaster, ON, March 2, 2020 -- TTR Amyloidosis Canada is joined by the Regroupement québécois des maladies orphelines (RQMO) in commending the Canadian Agency for Drugs and Technologies in Health (CADTH) and the Institut national d'excellence en santé et...
CALL FOR PROPOSALS
TTR Amyloidosis Canada and Regroupement québécois des maladies orphelines (RQMO) are pleased to announce a Call for Proposals for Unfolding Transthyretin Amyloidosis: The Akcea Canada Young Investigator Grants Program. This new research program will...
Hereditary Amyloidosis Canada and Regroupement québécois des maladies orphelines Announce Akcea Canada Young Investigator Grant Program
-First Canadian Program to Stimulate Research into Transthyretin Amyloidosis - Toronto, ON and Montreal, QC , December 19, 2019 -- TTR Amyloidosis Canada and Regroupement québécois des maladies orphelines (RQMO) announced today that they have...
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