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This group is for SMA patients, caregivers and medical professionals to discuss the latest research and news related to SMA. Here, information regarding treatments, research and development will be shared, and any input from the SMA community is welcome.
SMA News & Perspectives – Weekly Recap (August 12 – August 16)
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SMA News Today Moderator 1 month ago.
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SMA News Today forum moderators and contributors have been joining forces to create exclusive audio content for the SMA community. Here are the podcast episodes from August 12 through August 16.
August 12
We discuss how SMA patients in Ontario are being granted wider access to Spinraza. Then, Director of Multichannel Content, Michael Morale, discusses how current treatments are giving people with SMA a brighter future.
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August 14
Director of Multichannel Content, Michael Morale, discusses options for receiving Zolgensma. Then, Community Development Manager Kevin Schaefer reads from Angela Titcombe’s 31 Days of SMA story. Angela talks about being a teacher with SMA.
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August 16
We discuss “Rare Barometer”, which is a program that is helping Eurordis shape EU rare disease policies. Also, Community Development Manager Kevin Schaefer reads from his latest column about diversity within the SMA community.
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