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....

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...

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...