We greatly value cross-party support from parliamentarians across the UK. This is vital for improving neuromuscular services, faster access to treatments, and enabling people with muscle wasting and weakening conditions to live independently. Here you will find the latest information about the work of the parliamentary groups in Westminster, Wales, Scotland, and Northern Ireland.
Our Parliamentary work
Parliamentary Groups on Muscular Dystrophy
In each of the Houses of Parliament at Westminster, Scottish Parliament, Welsh Senedd, and Northern Ireland Assembly there are parliamentary groups dedicated to muscular dystrophy and neuromuscular conditions
The aim of these groups is to raise awareness of all types of muscle wasting and weakening conditions and promote links between parliament, individuals and families affected by these conditions, charities, scientists, health professionals, and decision-makers.
We provide the secretariat for the parliamentary groups across the UK. This means we are involved in setting up meetings, building agendas, and providing background information to aide discussion at the meetings.
Westminster (UK) All Party Parliamentary Group
The All-Party Parliamentary Group (APPG) on Muscular Dystrophy is chaired by Mary Glindon MP.
Latest group activity
The APPG last met in February 2024. This meeting was an opportunity to hear about the outcomes of our audit of UK neuromuscular services, as well as the latest updates on treatments for people living with muscle wasting and weakening conditions.
Recent inquiries and work
In recent years, the APPG has played a critical role in raising awareness and leading discussions of key issues facing people living with muscle wasting and weakening conditions.
In 2013, we examined the needs of patients with rare diseases, such as muscular dystrophy and related neuromuscular conditions, to access potential treatments without delay if they become available.
Read the report on Access to high-cost drugs for rare diseases.
In 2015, we found that major reforms to the health landscape in England (e.g. the Health and Social Care Act 2012 and publication of the UK Strategy for Rare Diseases) in many cases did not result in improved care. In some instances, these reforms have made it even harder for patients to access support because of significant regional variation in the commissioning and funding of services.
Read the report on the Impact of NHS reforms on access to neuromuscular services.
In 2018 we called for immediate action to improve access to appropriate psychological support for people with muscular dystrophy, as well as their families, given the years long struggle people affected by these complex conditions can face in accessing the services they need.
Read the report on Access to Psychological Support for People with a Neuromuscular Condition.
In 2023, the APPG’s latest report recommended how the UK National Screening Committee could improve its approach to assessing rare conditions and leverage newborn screening to shorten delays in diagnosis.
Read the report on Newborn Screening for Rare Conditions.
The Cross-Party Group in the Scottish Parliament on Muscular Dystrophy
The Cross-party group (CPG) on Muscular Dystrophy is chaired by Jackie Baillie MSP.
Latest group activity
The CPG last met in November 2023. This was an opportunity to hear about the latest updates on neuromuscular service provision, in addition to wider topical issues affecting people living with muscle wasting and weakening conditions in Scotland. It also included an Annual General Meeting (AGM).
Find the meeting minutes on the CPG’s official parliamentary page.
The Cross-Party Group on Muscular Dystrophy in the Senedd Cymru/Welsh Parliament
The Cross-Party Group (CPG) on Muscular Dystrophy and Neuromuscular Conditions in Wales is chaired by Huw Irranca-Davies MS.
Latest group activity
The CPG last met in November 2023. This meeting was an opportunity to hear about the latest updates on newborn screening in the UK as well as the challenges facing neuromuscular services in Wales. It also included an Annual General Meeting (AGM).
Find the meeting minutes on the CPG’s official parliamentary page.