Canadian access

Member Update

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! http://www.health.gov.au/internet/ministers/publishing.nsf/Content/97A19CED2588BA3ACA2582860010075C/$File/GH051.pdf https://www.smh.com.au/politics/federal/it-s-magic-families-advocates-celebrate-lifesaving-drug-announcement-20180506-p4zdoa.html Susi Vander Wyk Executive Director Cure SMA Canada 103-7134 Vedder Rd, Chilliwack, BC, V2R 4G4 1-855-824-1277 (toll free) www.curesma.ca “What lies behind us…

CADTH patient input form

Member Update, Research News

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 Disorders and Cure SMA Canada Author of the Submission Durhane Wong-Rieger and Susi Vander Wyk Name of the Primary Contact for This Submission Durhane Wong-Rieger…

A picture is worth 1000 words

Member Update, Research News

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 to a panel of various levels of government officials. In a room filled with representives of various government bodies, drug companies, health industry, and reps…

Community update Action needed!

camps, Member Update

Dear Cure SMA Canada Community and supporters, Thank you for your continued vigilance in our many efforts for fighting for access to treatment.  Cure SMA Canada has been working hard to have the concerns of the SMA community heard by people that are in the driver’s seat of the decision making process. What we’ve been…

Please help the Canadian SMA Community!!!

Member Update

Please help the Canadian SMA Community!!! Sign and share this petition for access to the only treatment for SMA. We need the Canadian government to hear us!! Please sign and share with everyone you know and request them to share it! This matters to all Canadians affected by rare diseases!! It’s life saving for those…

Cure SMA Canada has been working feverishly in our fight for broad access to treatment. 

Member Update, Research News

Dear Cure SMA Canada Community,    Cure SMA Canada has been working feverishly in our fight for broad access to treatment.   A short but important update in these meetings and activities:  The Pan Canadian Pharmaceutical Alliance (pCPA) has moved Spinraza to the list of drug products that are under active negotiation.  Now is the right time for…