Plans to implement the UK Rare Diseases Framework
NHS England joined our Community Check-in on Tuesday to talk to people affected by rare conditions about the approach, ideas and themes for the action plan.
Action plan themes
Fiona Marley, Head of Highly Specialised Commissioning at NHS England and NHS Improvement presented an overview of the emerging themes so far:
- Patients with undiagnosed conditions
- Continued innovation in genomics
- Improving access to drugs and specialist treatments
- Ensuring good for for rare disease services in Integrated Care Systems White Paper
- Reduction in health inequalities
- Legacy work from UK Strategy for Rare Diseases
We were also joined by Matthew Miles, Engagement Manager and Andrew Stewart, Communications Manager for Specialised Commissioning at NHS England and NHS Improvement, and Dr Ayesha Ali, Medical Advisor to Highly Specialised Commissioning at NHS England and NHS Improvement
Over 60 organisations and individuals attended to share their views and ideas in a wide ranging and constructive discussion.
‘Thanks for a very valuable meeting. For the first time in my life I feel that I’m being taken seriously and wanted to share that.’
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