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.
Onpattro is approved in the US
FDA Approves Alnylam’s Onpattro for Polyneuropathy of hATTR Amyloidosis. To learn more, please visit the website.
New Genetic Testing Program for hATTR patients
Akcea and Ambry Genetics to Launch hATTR Compass, a Genetic Testing Program for Patients with Suspected Hereditary ATTR Amyloidosis. To learn more, please visit the website.
Report on hATTR treatments shared at ICER meeting
A report on treatments for hereditary transthyretin-related (hATTR) amyloidosis by the Institute for Clinical and Economic Review (ICER) was reviewed by the Midwest Comparative Effectiveness Public Advisory Council (Midwest CEPAC) at the ICER meeting held in Chicago...
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