Updates & Developments
On April 16, 2019 the National Institute for Health and Care Excellence (NICE) releases its final guidance recommending inotersen (Tegsedi) be placed on England’s National Health Service for the treatment of nerve damage from hereditary transthyretin-mediated...read more
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....read more
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.read more
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....read more
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...read more
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.read more
Akcea and Ionis Announce Approval of Tegsedi (inotersen injection) in Canada. To learn more, please visit the website.read more
FDA Approves Alnylam’s Onpattro for Polyneuropathy of hATTR Amyloidosis. To learn more, please visit the website.read more
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.read more
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...read more
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