Fund awareness, care and treatment of Stiff Person Syndrome

Background

Provide funds to improve awareness of Stiff Person Syndrome (SPS), recognise the value of patient lived experience, increase access to specialist care, remove unnecessary barriers to clinically appropriate medications, including treatments not routinely available in the UK.

Additional details

SPS is a rare, brutal, catastrophic progressive condition, causing excruciating muscle spasms, rigidity & falls. Due to the triggers of the disease, patients often end up housebound unable to leave their homes. Most GP's have never met patients diagnosed with this condition so have little understanding of how truly debilitating it is. Gaining access to appropriate medications alongside dealing with the brutality of the disease is exhausting. We desperately need access to diazepam nasal spray.

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