European Reference Network on GEnetic TUmour RIsk Syndromes - GENTURIS

ended

ERN GENTURIS is a European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes (genturis). The patients with rare genetic tumour risk syndromes are at very high hereditary risk of developing multiple tumours, which are often located in multiple organ systems. In case they are diagnosed with cancer they need different treatment and follow-up as compared to non-hereditary cancers. In addition, ERN GENTURIS takes care of the relatives of these patients, for which prevention and early detection of tumours is of great importance too. There are 4 thematic groups of syndromes: 1: Neurofibromatosis type 1, neurofibromatosis type 2 & schwannomatosis, 2: Lynch syndrome & polyposis, 3: Hereditary breast & ovarian cancer, 4: Other rare - predominantly malignant - syndromes. The last group includes syndromes not covered in the other groups. It is a heterogeneous group with very small numbers of patients that will benefit greatly from a centralised approach. ERN GENTURIS is working to improve identification of these syndromes, to minimise variation in clinical outcomes, to design and implement EU-guidelines, develop the GENTURIS registry, support research, and empower patients. The network will educate the public and healthcare professionals via the website www.genturis.eu, by organising regular webinars and courses, and by fostering sharing of best practice across Europe. Access to multidisciplinary care (digital as well as face-to-face) will be improved, to share and discuss complex cases. This application proposes funding support for the enlargement, sustainability, and continuation of the coordination, management, and non-clinical activities of the ERN GENTURIS for 18 months from 1 March 2022 until 31 August 2023. It implements the EU4Health Programme’s general objective of strengthening health systems (Article 3(d) through the specific objectives defined in Article 4(f), (g) and (i) of Regulation (EU) 2021/522.)