Impact of COVID-19 on Spinraza Managed Access Agreement
Read NICE statement about the impact of COVID-19 on access to Spinraza.
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Wave halts development of DMD drug
17/12/2019Wave Life Sciences have announced the disappointing news that the development of the drug suvodirsen for DMD has been discontinued.
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Duchenne exon skipping drug approved by FDA
13/12/2019Sarepta’s exon skipping drug, VYONDYS 53™ (golodirsen) has been approved by the Food and Drug Administration (FDA). The FDA regulates drugs in the USA.
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UNITE-DMD update
09/12/2019Preparatory work for the clinical trial is underway and progress is being made towards the development of next-generation microdystrophins.
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Update on Spinraza and adult services
03/12/2019NHS England and Patient Advocacy Groups have recently been focused on identification of hospitals with the right expertise to treat eligible adults who have SMA with nusinersen.
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Six out of 10 supermarket chains do not have a single Changing Places toilet
26/11/2019Six out of 10 supermarket chains do not have a single Changing Places toilet, according to research by Muscular Dystrophy UK.
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Calls for cough assist machines to be NHS funded
21/11/2019Calls for cough assist machines to be NHS funded after Derby and Derbyshire CCG introduce new policy removing funding
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Highlighting Changing Places on World Toilet Day 2019
19/11/2019World Toilet Day 2019 aims to raise awareness about the 2.6 billion people worldwide who don’t have access to toilets
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Manifesto for Muscles launched ahead of general election
18/11/2019The General Election is on 12 December 2019. We know that every day counts for people living with a muscle-wasting condition, but do all the Parliamentary candidates know that?
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Britain’s top chefs on stage after creating epic dinner
15/11/2019Britain’s top chefs on stage after creating a dinner, hosted by Prue Leith at Porchester Hall