TreatSMA hosted another Physio with Marion session on Sunday, and thanks to Marion and all of those who took part in asking questions. This was a special addition which had the usual questions and answers but more…..
Today, European Medicines Agency (EMA) recommended a conditional approval of the breakthrough gene therapy drug Zolgensma® for treating spinal muscular atrophy across the European Union.
An article was recently published in the Lancet providing data from an observational study of adults between the age of 16 and 65 with SMA. This is the first verified data on adults and could prove important in further discussions regarding extending the MAA. Further details below.
Members of our SMA community along with the most vulnerable members in our society which the coronavirus poses the greatest threat to have had enough.
On Sunday 22nd of March, the Prime Minister, Boris Johnson, announced that the UK Government would be setting up local hubs where extremely vulnerable people would be able to register for help with advice, medications and also food supplies.
As we see increasing numbers of COVID19 infections TreatSMA is committed to providing the community with as much help and support as possible.
TreatSMA have today released a community statement with regards to the current lack of information for a vulnerable community.