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Cyclist pedals across Canada to raise funds, awareness about genetic disease - Winnipeg

One man is cycling across Canada to raise awareness around access to treatment for Spinal Muscular Atrophy, a genetic disease that affect's a person's ability to move. ....

Bernard Mcneil , Vander Wyk , Adventureman Jamie Mcdonald , Susi Vander Wyk , Jeremy Bray , Louis Riel School Division , National Institutes Of Health , Global News , National Institutes , Jamie Mcdonald ,

Man's B.C.-Quebec bike ride aims to raise awareness of treatment barriers for rare spinal condition

Advocates living with a rare degenerative condition are lending their support to a grandfather who has set out on a two-month bicycle journey from B.C. to Quebec to raise awareness of inconsistent treatment coverage. ....

New Westminster , British Columbia , Taylor Danielson , Bernard Mcneil , Susi Vander Wyk , Drug Benefit Council , Hottest Spot , Rare Diseases , Vander Wyk ,

Evrysdi® (risdiplam) Receives CADTH Reimbursement Recommendation for Some Patients with Spinal Muscular Atrophy

Evrysdi® (risdiplam) Receives CADTH Reimbursement Recommendation for Some Patients with Spinal Muscular Atrophy
newswire.ca - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from newswire.ca Daily Mail and Mail on Sunday newspapers.

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Alberta provides treatment for genetic disorder

Alberta provides treatment for genetic disorder
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By Dale Woodard on January 30, 2021.
Alberta families of children with a rare genetic disorder received some good news on the treatment front Wednesday when it was announced children suffering from spinal muscular atrophy 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.
Spinal muscular atrophyÂ is a rare and progressive genetic disorder that causes muscle wasting. Alberta children with SMA and who may become ineligible for the treatment while waiting for the final approval processes to be completed will be considered for funding on a case-by-case basis. ....

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Alberta may cover $2.8M cost of gene therapy for babies with rare condition

Toddler Mighty Max must now apply for Alberta government coverage of gene therapy for his rare disease.
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CBC News ·
Posted: Jan 27, 2021 4:18 PM MT | Last Updated: January 28
Max Sych is diagnosed with type two of spinal muscular atrophy (SMA) in November. His family in northern Alberta is trying to raise $2.8 million to pay for the world’s most expensive medicine. (GoFundMe)
A temporary move by the Alberta government to cover the cost of a life-changing new gene therapy is a sign of hope for the northern Alberta family of a little boy dubbed Mighty Max.
A Wednesday announcement that the province will foot the bill for a $2.8-million, one-time treatment on a case-by-case basis is no guarantee that two-year-old Max Sych will receive the therapy for his rare condition, spinal muscular atrophy (SMA). ....

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