Come along to the first meeting of the All Party Parliamentary Group (APPG) for Muscular Dystrophy after the general election, which is taking place on Tuesday 18th July from 11.30am to 1.30pm in Committee Room 4 in the Houses of Parliament.
The meeting will be an opportunity to:
- discuss access to Spinraza in the UK. Spinraza is a drug to treat spinal muscular atrophy (SMA), and it was recently approved by the European Medicines Agency (EMA) for SMA Types 1, 2 and 3. Whilst it sought approval from the EMA, the drug company, Biogen, made Spinraza available for free to eligible SMA Type 1 patients. However, due to bottlenecks and lack of capacity in the NHS, a majority of these patients are not yet receiving treatment in the UK. We’re pressing for Biogen, NHS Trusts and NHS England to reach urgent agreement on costs to ensure that all eligible infants with SMA Type 1 can receive treatment through the Expanded Access Programme.
- establish the priorities for the APPG for the forthcoming year
For more information
Muscular Dystrophy UK provides the organisational support for the All Party Parliamentary Group for Muscular Dystrophy. To register your attendance for the meeting and for more information, please contact Jonathan Kingsley at firstname.lastname@example.org or on 020 7803 4839.