The committee is chaired by Professor Deirdre Kelly CBE, with members covering key stakeholders involved in neuromuscular care including neuromuscular specialist consultants, neuromuscular allied health professionals, neuromuscular services users, and NHS England.
The committee, meets quarterly to discuss a range of topics relevant to neuromuscular services such as access to treatments, planned changes to commissioning of neuromuscular services, activities to support upskilling for NHS specialist staff, specialist mental health provision, and the UK Rare Disease Framework. The committee comes together as a dedicated team working collaboratively to ensure MDUK's priorities and campaigns evoke real changes for people living with neuromuscular conditions.
Contact our policy team at campaigns@musculardystrophyuk.org to learn more about the committee and the work they do.