The NHS proposals for rare disease care - what's next?
Coordination, an alert card and effective transition from paediatric to adult care for those with rare diseases, along with better access to research - promises given by Conservative MP Nicola Blackwood on Rare Diseases day at the end of February this year. What does this mean for people in the UK with superficial siderosis and how might these developments have a more global impact?
I was invited to join a webinar with Rare Disease UK on Thursday 14th, hosted by Evan Wroe from Rare Disease UK and Fiona Marley, Head of Specialist Technology Commissioning for NHS England. I was joined online by a number of rare disease organisations and Fiona Marley spoke about how she intends to implement the proposals.
The Silent Bleed - our position
Considering that the UK’s strategy’s aims are to: