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Rare Disease Day Special featuring Janet Bloor and Nick Meade - February 2022

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Manage episode 321496172 series 2324999
Content provided by Partners4Access. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Partners4Access or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ro.player.fm/legal.

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

  continue reading

94 episoade

Artwork
iconDistribuie
 
Manage episode 321496172 series 2324999
Content provided by Partners4Access. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Partners4Access or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ro.player.fm/legal.

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

  continue reading

94 episoade

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