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This course was inspired by a talk given by Julian Stanley at the Findacure ‘leading a rare patient group’ workshop in January 2020.

Findacure thanks Chiesi Pharmaceuticals for the grant they generously gave to support the running of Findacure’s E-learning portal in 2019.

Findacure’s E-learning portal is part of our Rare Disease Patient Groups Empowerment Programme, which is funded by The National Lottery Community Fund (Project ID: 0010358290), and this guide was completed as part of that grant.