Category: Updates

  • We are back!

    We are back!

    Truthfully, we have been gone, despite being a little quiet, we continue to fight hard behind-the-scenes for formal approval next year for all of the available treatments.

  • UPDATE – Physical ability: What is important to you? Take part

    UPDATE – Physical ability: What is important to you? Take part

    We have received notification that the Physical ability: What is important to you? The study has reached its quota for non-ambulant participants. As well as this they have extended the age range to 2-60 years old. Therefore, please see updated invitation below: Are you interested in participating in two telephone/video interviews to discuss your experience…

  • Join the NIHR online Q&A: severe neuromuscular diseases in children

    Join the NIHR online Q&A: severe neuromuscular diseases in children

    On Wednesday 12th July 2023, 7pm to 8pm the National Institute for Health and Care Research, which supports delivery of research in the NHS, public health and social care and Muscular Dystrophy UK, the UK charity for individuals and families living with muscle-wasting conditions are hosting a webinar where you can ask leading experts about the…

  • Join the NIHR online Q&A: severe neuromuscular diseases in children

    Join the NIHR online Q&A: severe neuromuscular diseases in children

    On Wednesday 12th July 2023, 7pm to 8pm the National Institute for Health and Care Research, which supports delivery of research in the NHS, public health and social care and Muscular Dystrophy UK, the UK charity for individuals and families living with muscle-wasting conditions are hosting a webinar where you can ask leading experts about the…