Dear members,
We at Cure SMA Canada continue to monitor, provide input and represent our SMA community as we navigate the process of approval of Biogen’s Nusinersen/Spinraza in Canada. We’d like to update you on this process as well as prepare you for the requirements for the best possible result for our SMA patients.
Through recent meetings with experienced patient advocacy group members, several points are clear. To be a strong voice, we must remain united to be heard from the various levels of government. We can and will be a force through our unification, as we’ve always stated, “Together We Will Find a Cure”.
So what now? We are still in the que waiting for a response from Health Canada. However, we are working on the next steps in the event that Biogen’s submission receives their official approval. This is where you come in. In the near future, we will have an FSMAC representative phoning some of our members that meet specific criteria with a questionnaire as we compile data. After a positive response from Health Canada, we will be sending out a survey via email to the patient group that meets the required criteria. The data will be compiled and used for our input as the Canadian SMA patient group to ensure that our community’s needs are incorporated to the Common Drug Review process.
We at Cure SMA Canada are committed to our Spinal Muscular Atrophy patients, their families and community. We will continue to offer support to our families as well as maintain our commitment to research and treatment.
Together We Will Find A Cure!
