Calls for flagging systems to improve emergency care
We are calling on ambulance services to introduce flagging systems so people with muscle-wasting conditions receive the specialist support needed.
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Wave initiates global Phase 2/3 trial in DMD
28/06/2019Wave Life Sciences has announced that it has started a global Phase 2/3 clinical trial testing suvodirsen in boys with DMD.
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Guide to SMA standards of care
27/06/2019Treat-NMD have published a family-friendly guide to the SMA standards of care.
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Seeking views on SMA treatment options
27/06/2019We are asking for people with SMA to complete this survey to inform a submission to NICE for a new gene therapy.
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Trailblazers respond to new Government announcement on disability
25/06/2019Today (25 June 2019) new measures were announced by the Prime Minister to “tackle barriers faced by disabled people”.
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Access scheme renewed for Duchenne treatment
25/06/2019Early access scheme has been renewed for Duchenne treatment
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An update on access to Spinraza
20/06/2019NICE has today confirmed that it received one appeal against the draft Managed Access Agreement (MAA) for Spinraza.
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Fight to the Other Side – the song that saved a life
20/06/2019The video of a song written by a very high profile American singer/songwriter for her English friend living with FSHD is being launched on FSHD Awareness Day
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Latest news on access to Spinraza
14/06/2019Along with other patient groups and clinicians we have written to NICE and NHS England about access to Spinraza.
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Thank you to all our volunteers!
11/06/2019Find out how we said thank you to hundreds of members of the team
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Trailblazers on Cervical Screening Awareness Week
11/06/2019Trailblazers call for more awareness around equal access to cervical screening during Cervical Screening Awareness Week (10-16 June)