Published Date Author
08/05/2015 Jonathan Kingsley
Muscular Dystrophy UK has increased the number of parliamentary supporters in the Houses of Parliament who are backing our campaigns following the general election yesterday.
With the help of our supporters, over 50 newly elected MPs are joining the fight against muscle-wasting conditions, with MPs from across the party political spectrum signing up to Muscular Dystrophy UK’s ‘Manifesto for Muscle’ pledges over the last few weeks. Michelle Young, whose son Michael, has Duchenne muscular dystrophy, was one of many supporters pressing for prospective MPs to support our manifesto pledges.
We greatly appreciate their support, and the backing of all the MPs who have also been supporting our campaigns for improved access to specialist care and services and fast access to treatments in recent years.
Muscular Dystrophy UK Chief Executive, Robert Meadowcroft, has written today to the Prime Minister, seeking answers on:
how the Government will intervene with NHS England to ensure fast access to Translarna
ensuring NHS England adopts a faster and more streamlined approach to the evaluation of new drugs
plans to establish a ring-fenced fund for rare disease drugs
MPs supporting the Manifesto for Muscle
Newly elected MPs have pledged to:
press for faster access to new treatments, such as Duchenne muscular dystrophy treatment, Translarna, so that they can reach patients without delay
discuss access to local services by joining us at local Muscle Group meetings
join the All Party Parliamentary Group for Muscular Dystrophy
meet with Trailblazers and join the All Party Parliamentary Group for Young Disabled People
promote greater understanding of muscle-wasting conditions among welfare, housing and equipment providers
meet with local health authorities to discuss action needed to improve services for people with muscle-wasting conditions
Get involved and have your say
This is now your chance to get involved and have your say to help to shape the APPG’s work over the next couple of years and how more than 50 newly elected MPs can support the fight against muscle-wasting conditions.
The All Party Parliamentary Group (APPG) for Muscular Dystrophy is a group of MPs and Peers in the Houses of Parliament which raises awareness of all types of muscle-wasting conditions and promotes links between parliament, individuals and families affected by these conditions, charities and scientists, health professionals and decision-makers.
Following the general election, Muscular Dystrophy UK, as the official secretarial support for the APPG, is conducting a brief survey on topics and issues for consideration by the APPG and welcomes input from individuals and organisations with an interest in the group.
Take part in the survey, which closes on Friday 29 May.
Find out more about our parliamentary action across the UK – for more information, please get in touch with Jonathan Kingsley at email@example.com or call 020 7803 4839