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Rare Diseases Implementation Group Core Team

The day to day running of the Rare Diseases Implementation Group is managed by four key individuals, all committing between 3.5 and 18 hours a week to support the priorities set by the Wales Rare Diseases Action Plan.

They are supported by a group of individuals across all healthcare and policy sectors including representation from Welsh Government, health boards, specialist services, charities and individuals affected by rare diseases themselves. 

We meet quarterly to monitor the progress of the improvement of access and quality of Heath Care and Social services to those who journey through our healthcare systems as patients, families and carers.