COVID has proven we can quickly set up infrastructure without long-term clinical data. It’s time to do the same with rare diseases, says Durhane Wong-Rieger, president and CEO of Canadian Organization for Rare Disorders. Vanessa Hrvatin, Feb 28 2022 Sasha Kirkland, pictured with her husband, Mark and son Maks, lives with spinal muscular atrophy (SMA).…
Families of Alberta children suffering from spinal muscular atrophy (SMA) may now be eligible to receive funding for gene replacement therapy treatment. Alberta’s government is working with Novartis Pharmaceuticals Canada Inc. to provide interim patient access to Zolgensma. SMA is a rare and progressive genetic disorder that causes muscle wasting. Alberta children with SMA and…
Cure SMA Canada is inviting you to a scheduled Zoom meeting. Topic: Cure SMA Canada – Treatment info and updates Time: May 7, 2020 09:00 Pacific Time (US and Canada) Join Zoom Meeting https://us02web.zoom.us/j/89905074506?pwd=bkVWbUhTSVhqZC9CL3lyWXZQK2poZz09 Meeting ID: 899 0507 4506 Password: curesma One tap mobile +16699006833,,89905074506# US (San Jose) +19294362866,,89905074506# US (New York) Dial by your…
Covid-19 and people with neuromuscular disorders: World Muscle Society position and advice – Update 02-04-2020 Amendments to the original document text 3. What consequences does the risk of Covid-19 infection have for treatments used in people with NMD? Additional advice in this paragraph: • Patients should continue their usual cardiac treatments, including Angiotensin-Converting Enzyme…
SMA Data update with Biogen. Dear members of the SMA community, Following your request for updates regarding new SMA data in adult patients, we wanted to share that a real-world study of nusinersen (SPINRAZA ™) use in teens and adults with SMA was published in The Lancet Neurology on March 18, 2020 in a…
Here is the first video conference in a series of videos to be posted Video conference #1
Together in SMA with Biogen. Please click here to view or download the newsletter
Come Join Us at the National SMA Conference! February 27 – 29, 2020 Hyatt Regency, King St., Toronto, ON Receive information and support for SMA Patients and Caregivers · Learn about the latest in SMA treatment access in Canada · Understand the Canadian pharmaceutical access process · Learn about Canadian research projects and how they impact the…
Cure SMA Canada is recognized for our contribution to the Canadian government’s understanding of the impact of SMA and played a major role in the associated changes to access to treatment brought by this contribution. Thank you to all of those who participated and supported Cure SMA Canada initiatives! Together we truly do make a…
October 7, 2019 Dear members of the SMA community, As part of our promise and commitment to keep the Canadian SMA community apprised of important milestones regarding SPINRAZA™, we are sharing an update on recent developments regarding reimbursement in the province of Nova Scotia. Effective October 1, 2019, the Government of Nova Scotia has expanded…