We would like to share with you today some information about the Policy Brief on Patient Empowerment developed in the framework of the Joint Action on Rare Diseases (RD ACTION) Work Package 2 (Dissemination), Task 5 "Promoting resilient health systems". This Task is managed by the Italian Institute of Health, ISS National Centre for Rare Disease, led by Dr Domenica Taruscio. We will listen to the presentation of Victoria Hedley at the RD Action Joint workshop with INNOVCare at Frambu, Norway.