On the 19th of May, Biogen attended a meeting arranged between 4 patient advocacy groups: Muscular Dystrophy UK, SMA Trust, SMA Support UK and TreatSMA.
EAP started/starting Newcastle Belfast East Dundee Great Ormond Street Oxford Evelina Leeds Liverpool Glasgow Bristol Cardiff Sheffield (August) Working towards EAP Cambridge Birmingham Oswestry Manchester We're still waiting on responses from St George's (London) Contacts we have Evelina Childern's Hospital: Dr…
Today, Committee for Medicinal Products for Human Use of the European Medicines Agency adopted a positive opinion on Spinraza!
Biogen announced that the Expanded Access Programme for nusinersen will not be extended to SMA types 2 and 3.
Every month, across the UK, parents are hearing the devastating words from doctors that their baby is extremely unlikely to survive to see their 2nd birthday. That they will helplessly be forced to watch as their baby grows weaker before their…
On 5 April 2017, the NORTH STAR / SMA-REACH UK group of seventy clinicians, physiotherapists, clinical trial coordinators, industry and advocacy groups’ representatives, including SMA Support UK, sent an open letter, signed on behalf of the group by Professor Francesco Muntoni, setting out their position and recommendations to the National Institute for Health and Care Excellence (NICE), NHS England’s Care and Clinical Reference Groups (CRGs), NHS Trusts and Biogen.
TreatSMA had a meeting today with SMA Support UK and The SMA Trust due to the current meetings being held by EMA and their decision expected to be made very soon.