Duchenne Awareness Day

EDM number 318 in 2014-15, proposed by David Anderson on 03/09/2014.
Categorised under the topics of Diseases and Health services.

That this House acknowledges the first World Duchenne Awareness Day taking place on 7 September 2014; recognises the efforts of the Muscular Dystrophy Campaign and other Duchenne charities and support groups to highlight the need for Duchenne research, improved healthcare and independent living across the UK; notes the Muscular Dystrophy Campaign's leading role in fundraising for vital Duchenne research through its Duchenne Research Breakthrough Fund and Duchenne Forum initiative; further notes the new Fast Forward campaign launched by the Muscular Dystrophy Campaign calling for faster access to specialist treatments for muscle-wasting conditions which become available; acknowledges the work of the Trailblazers young campaigners network in promoting and enabling a better quality of life and independent living for young men with Duchenne muscular dystrophy; calls on the NHS to meet the required standards of care for more than 2,500 boys and young men in the UK with Duchenne muscular dystrophy through NHS neuromuscular service specifications; and urges the Government to ensure that people affected by Duchenne muscular dystrophy have rapid access to emerging treatments which are safe and effective.

This motion has been signed by a total of 53 MPs.