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Rare Disease Day Special featuring Janet Bloor and Nick Meade - February 2022
Manage episode 321496172 series 2324999
For this Rare Disease Day episode, Janet and Nick discuss a range of topics associated with the rare disease community and patient advocacy. They address new-born screening, patient registries, the UK rare disease framework, the NICE methods review and much more!
Presenter: Georgie Rack, Communication Executive
Contributors: Janet Bloor, CEO of Duchenne Nexus Advocacy (DNA) and Nick Meade, Director of Policy and Joint Interim Chief Executive of Genetic Alliance UK
Producer: Operations team
93 פרקים
Manage episode 321496172 series 2324999
For this Rare Disease Day episode, Janet and Nick discuss a range of topics associated with the rare disease community and patient advocacy. They address new-born screening, patient registries, the UK rare disease framework, the NICE methods review and much more!
Presenter: Georgie Rack, Communication Executive
Contributors: Janet Bloor, CEO of Duchenne Nexus Advocacy (DNA) and Nick Meade, Director of Policy and Joint Interim Chief Executive of Genetic Alliance UK
Producer: Operations team
93 פרקים
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