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Google deprived TreatSMA of access to email and data

  • 11 January 2018

On 2 January 2018 all mailboxes of TreatSMA were suspended by Google without warning. As a result, the TreatSMA team lost access to all emails, address books and shared documents which until then were hosted on Google’s G Suite service.

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Letter to NHS England from the medical and patient communities

  • 28 October 2017

Efforts continue on bringing about changes to the NHS commissioning policy on nusinersen. Last night almost 40 clinicians and the four UK SMA groups sent another letter to NHS England. The letter underlined our position that nusinersen treatment under the Expanded Access Programme should be provided to all those who have type 1 SMA.

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To Whom It May Concern

  • 21 October 2017

I wish you knew the turmoil my heart is in with every single waking beat. I wish you felt the lump in my throat caused by the overwhelming fear of defeat. I wish you saw what I see when I…

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