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 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!

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!!!

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. 

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…

Latest advancements

The Cure SMA drug pipeline is one of the primary ways we evaluate the success of our research program. The pipeline identifies the major drug programs in development, and tracks their progress from basic research through clinical trials Key Measurements The pipeline measures the progress of our research in two key ways. First, by tracking…

Community update January 4, 2018

Dear Canadian SMA Community and its supporters, Before the Christmas holidays, our community received a shocking response from CDEC (Canadian Drug Expert Committee) of only recommending reimbursement of a small subset of type 1 patients.  We are very frustrated with the decision,  it is unacceptable for an organization such as CADTH to not recognize the…