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"We had many difficulties with secondary transfer relating to funding for necessary adaptations for our son. We're so grateful Muscular Dystrophy UK has these comprehensive guidelines to help families like ours. I don't know how we would have overcome all the hurdles we faced without this support." - Joanne Worrell, whose son Harry has spinal muscular atrophy.
Our education guidelines are now available. To access a full copy of the guidelines please email firstname.lastname@example.org or visit >> qoo.ly/b6cxn. ... See MoreSee Less
We're honoured to have been named PR Team Of The Year at last night's prestigious Charity Times Awards 2016.
We were nominated for leading the fight for access to Translarna, the first drug of its kind to treat an underlying cause of Duchenne muscular dystrophy for eligible boys.
Alongside an incredibly dedicated group of families, we launched a sustained media campaign in support of NHS funding.
With our family supporters' help, we were able to take the campaign directly to decision makers and regulators. Campaigners managed to secure two meetings with Scotland’s First Minister, and met the Prime Minister at the time, David Cameron.
In April, NICE delivered the brilliant news by approving Translarna for England, which then led to access in Wales and Northern Ireland. We continued the fight in Scotland, after it was initially rejected and together with the determination of families managed to secure access following an intervention from Nicola Sturgeon. Now, just one boy who lives on the Isle of Man is left without access, and we continue to campaign alongside this family.
This hard-fought victory in England, Scotland, Wales and Northern Ireland wouldn't have been possible without the commitment and relentless support from all our wonderful MDUK families, friends and supporters.
So, this award is for all of you. It's proof that we're stronger together. ... See MoreSee Less
Dr Ros Quinlivan leads the Transition service at Great Ormond Street Hospital and Queen Square, London, which ensures smooth transition for young adults leaving the paediatric service and moving onto the adult neuromuscular service. She is also working to develop the Adult North Star Network, which will improve the standards of care and support available to adults living with Duchenne muscular dystrophy in the UK.
This Friday we will be holding a live Q&A with Dr Quinlivan on our Facebook page between 4-5pm - join us and get your questions answered!