Face to face with the Secretary of State for Health

It's not every day that patients with a rare disease get to have face to face time with the most powerful person in healthcare in Britain, but that's exactly what happened this week.

We sat face to face with the Secretary of State for Health, the Rt Hon Wes Streeting MP, for a full 45 minutes to discuss with him the challenges the Duchenne community is facing right now.

Wes was attending an event hosted by Duchenne UK to promote our #TimeisMuscle campaign. Last month the MHRA approved givinostat for Duchenne muscular dystrophy. The company making givinostat is offering the drug for free to patients until NICE reviews it — but hospitals are struggling to deliver.

So we asked Mr Streeting to help — and he said YES! Twenty-five MPs also attended the event, along with the Secretary of State for Culture, the Rt Hon Lisa Nandy MP.