Respiratory care in centronuclear and myotubular myopathy

In January 2017 the Myotubular Trust hosted a free NHS event aimed at all UK myotubular and centronuclear myopathy patients, their parent(s), carers and NHS healthcare professionals. The event was run in conjunction with the Royal Brompton and Harefield hospital and the University College London hospitals.

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The event shared best NHS practice and experiences of managing MTM and CNM and  educated NHS healthcare professionals about potential treatments, with the aim of improving UK standards of care all for those affected by myotubular and centronuclear myopathy.

Attendees were also able to gain hands on experience of respiratory equipment, including ventilators and cough assist devices, learn the latest best practice in tracheostomy care and network with other UK patients, parents, carers and NHS professionals.

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