Patient Information Update – Spinraza
Cure SMA Canada – Patient Community Announcement Cure SMA Canada is very happy to announce that the pCPA, provinces and Biogen have FINALLY come to an agreement for the first…
Back up power supply
Power to go! There are times when all of us want electricity when we are miles from the nearest electrical outlet. Two key components to having power on the go…
Roche Community Update
5 July 2018 Dear SMA community members, As requested, we are very pleased to share with you an update of the RG7916 programme, which has reached a number of milestones.…
Wondering how to engage? Find out below!
Things are happening!! Join in! Participate! Support Cure SMA Canada as we work hard to support your family! Spinraza update Winnipeg Health Minister Meeting – SMA Demonstration Roche update Rebecca…
Susi’s story: One mother’s fight for access to lifesaving treatment
Susi’s story: One mother’s fight for access to lifesaving treatment In March, a group of families descended on Ottawa intent on making their voices heard at Parliament Hill. They were…
Community update – Biogen Resubmits Application
Dear Cure SMA Canada Community, We’d like to bring you up to date on some developments of the Spinraza approval process here in Canada. Due to the lack of compatible…
Canadian access
If Australia and 35 other countries can come to an agreement with Biogen, SO CAN CANADA!!! WHAT IS TAKING SO LONG CANADA???!!! CANADIANS HAVE NEED ACCESS NOW!! TICK TOCK CANADA!…
CADTH patient input form
Patient Input Template for CADTH CDR and pCODR Programs Name of the Drug and Indication Spinraza (nusinersin) for Spinal Muscular Atrophy Name of the Patient Group Canadian Organization for Rare…
Our Cure SMA Canada Community is proud to be loud!!
Actions completed and more action coming! I would like to update you on some recent activities of Cure SMA Canada. February 10, 2018 – Montreal – Sammy’s Valentine’s Gala was held to raise…
A picture is worth 1000 words
These photos were recently sent to Cure SMA Canada from James Radke, President at Zeal Access Inc. with the caption, “A picture is worth 1000 words”. Susi Vander Wyk speaks…