News
Government of Canada improves access to affordable and effective drugs for rare diseases
Government of Canada improves access to affordable and effective drugs for rare diseases In Canada, one out of twelve people—many of whom are children—has a rare disease. There are thousands…
SPACES
SPACES is a first-of-its-kind musical collaboration created for everyone with a disability by the SMA community. Each creative component of the program – song, music video and album art -…
August is Spinal Muscular Atrophy (SMA) Awareness month!
August is Spinal Muscular Atrophy (SMA) Awareness month! Cure SMA Canada spreads awareness throughout Canada to bring hope to a future where SMA is a curable disease. This year,…
Activist Sammy Cavallaro awarded Quebec National Assembly Medal of Honour
We are so so proud of the achievements of Sammy Cavallaro! Congratulations on your award Sammy! Thank you to the Cavallaro family for your dedication to improving life for people…
Cure SMA Canada Conference August 10-14th in Hope, BC.
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‘This disease will slowly rob me of everything’: Why are Canadians living with rare diseases waiting for treatment?
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…
Health Canada approves Risdiplam!
Treatment potential for our pediatric and adult patients! Dear Canada’s SMA community, Cure SMA Canada is happy to share that approval has been issued by Health Canada for Risdiplam for…
Interim access to Zolgensma for Alberta children
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…
SMA Data Update
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…