Ilaria Galetti is vice president of FESCA, the Federation of European Scleroderma Associations, Systemic Sclerosis ePAG representative in ERN (European Reference Network) ReCONNET, member of the DITA Task Force, of the AMR patient group and member of the Panel of experts of Rare 2030.
She always tries to collect the needs of the wider community and to interact with clinicians to improve the cure and the QoL of SSc patients. As patient representative, she often participates in consensus meetings aiming at creating diagnostic recommendations and risk scores or in CABs for the research and the development of new potential therapies for SSc. In ERN ReCONNET she has been involved in several activities such as in the State of the Art of CPGs and in SSc patient’s care pathways, always collecting the voice of the European SSc community and giving back the outcomes of the activities.