We recently had the opportunity to attend the inaugural AL conference in Brussels. It was hosted by The Amyloidosis Alliance. The link below will take you to the proceedings of the conference.
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 on September 13, 2018. 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.
Onpattro is approved in the US
FDA Approves Alnylam’s Onpattro for Polyneuropathy of hATTR Amyloidosis. To learn more, 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.
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.
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 website.
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. Patients, parents and caregivers can provide their opinion by completing this questionnaire by March 25, 2019: https://www.inesss.qc.ca/index.php?id=639&L=1. If you need help […]
Onpattro™ (patisiran) is now approved in Canada
Alnylam Pharmaceuticals, Inc. Announce Health Canada’s Approval of Onpattro™ (patisiran) for the treatment of polyneuropathy in adult patients with hereditary transthyretin-mediated (hATTR) amyloidosis. To learn more, please visit: http://investors.alnylam.com/news-releases/news-release-details/alnylam-launches-onpattror-patisiran-treatment-polyneuropathy
CALL FOR PROPOSALS
Hereditary Amyloidosis Canada (HAC) 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 provide trainees and early career investigators affiliated with Canadian academic centres and hospitals with funding for research into biomedical, clinical, […]