NHS England and the National Institute of Health and Care Excellence (NICE) are currently consulting on changes to the way that NICE appraises medicines for rare diseases that we believe could present a seismic shift in the way that rare disease patients access treatments in England. We held a webinar on Friday 2 December 2016 to discuss this with our members – below you can find the recording.
Consultation on NICE website: https://www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-technology-appraisal-guidance/consultation-on-changes-to-technology-appraisals-and-highly-specialised-technologies
Genetic Alliance UK survey on Individual Funding Requests: https://www.surveymonkey.co.uk/r/IFRcallforevidence
Patient Charter looking at NHS England’s commissioning of medicines for rare diseases:
https://geneticalliance.org.uk/our-work/access-to-treatment/nhs-england-s-commissioning-of-medicines-for-rare-diseases/
Patient Charter looking at NICE’s evaluation of highly specialised technologies:
https://geneticalliance.org.uk/our-work/access-to-treatment/nice-s-evaluation-of-highly-specialised-technologies/
European Patients’ Academy (EUPATI) guides on:
Fundamentals of health technology assessment:
https://www.eupati.eu/health-technology-assessment/fundamentals-of-health-technology-assessment-process/#Processes_and_methods
Quality Adjusted Life Years (QALY):
https://www.eupati.eu/health-technology-assessment/measuring-health-related-quality-life-hrqol/
Join our alliance of 200+ SUPPORT ORGANISATIONS AND charities