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

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

More information on:

Genetic Alliance UK: https://geneticalliance.org.uk/

Duchenne Nexus Advocacy Facebook page: https://www.facebook.com/pages/category/Nonprofit-organization/Duchenne-Nexus-Advocacy-DNA-103126328289199/