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…
Biogen Community Update – December 22, 2017 Dear members of the SMA community, In response to your request for information, we would like to provide you with an update on the health technology assessment reviews for SPINRAZA™ (nusinersen) conducted by the Common Drug Review (CDR) and L’Institut national d’excellence en santé et en services sociaux…
Dear SMA Community, We have had a response today from INESS which is the Insitut national d’excellence en sant’ et en services sociaux. They have stated that they are NOT recommending the listing of Spinraza for any type of SMA in Quebec. We at Cure SMA Canada are completely devastated to hear these results. We…
Hyatt Regency – King St. W, Toronto, Ontario November 5, 2017 Held in conjunction with the CORD (Canadian Organization for Rare Diseases) conference which will be November 6-7, 2017 at the same location. We recommend attending both conferences. SEE EVENT DETAILS Attendance Scholarships available. To register please send an email to sma_can@telus.net We highly…
Dear SMA Community, We hope you are enjoying your summer. We know many of you are anxious about the approval process for Spinraza in Canada and therefore would like to update you. To more fully understand the timing of reviews by the Common Drug Review, you will find the following link helpful: https://www.cadth.ca/nusinersen. If you…
We would like to share a very special donation from a very special family. Chantelle and Damien Commisso recently held a toy drive in memory of their precious baby boy Callen for his first birthday. They wanted to do something special for his birthday for the newly diagnosed packages we send out to our families.…
We have completed our submission in to CADTH! Thanks to everyone’s support and heartfelt responses, we feel we have a very strong message to the drug review committee expressing the needs of the entire SMA committee for effective treatment and the benefits of Spinraza to improve the lives of all persons and families affected by…
This year Cure SMA Canada will be having a conference in conjunction with CORD ( Canadian Organization for Rare Diseases What to expect?Speakers from various drug companies, health care professionals, physicians and individualswhen : November 5-6, 2017 Where: Toronto, Ontario2017/11/05 15:20:49
Congratulations – Cure SMA Canada has been selected as one of the #Tangerine20 contest’s Top 20 finalists. Cure SMA Canada’s mission touched our hearts, and deeply resonated with us and our goal to give back. Your organization rose to the top of nearly 400 inspiring entries for the #Tangerine20 contest! It was an extremely tough…