Quality of life in Italian patients with Multiple endocrine neoplasia type 1 (MEN 1): results of an extensive survey.
Francesca GiustiFederica CioppiCaterina FossiFrancesca MariniLaura MasiFrancesco TonelliMaria Luisa BrandiPublished in: Orphanet journal of rare diseases (2021)
The possibility of having access to a clinical Referral Center for their complex rare disease, together with the support of a dedicated patient association, has been demonstrated to be the ideal model for the management of post-diagnosis shock, and contributes to the preservation of a good Health-Related Quality of Life for MEN1 patients.