NET Italy was founded in 2011 to help fulfil the needs of those diagnosed with neuroendocrine cancer and their caregivers, i.e. finding correct information about their disease, putting them in contact with other patients with whom to exchange experiences. NET Italy is an “association of patients dedicated to patients”. Its registered office is at the University Hospital of Bologna, Policlinico Sant’Orsola-Malpighi, although it mainly operates through the most important social networks (Facebook, Instagram, Twitter) which allows greater coverage and direct contact with other advocacy groups and patient associations from all over the world.
NET Italy is a nonprofit association (Onlus), operating on a volunteer basis with the aim of acting for the benefit of the whole NET community. It promotes health education and information about neuroendocrine tumors, as well as practical support to those affected by these diseases. NET Italy Onlus encourages the development of studies and research and spreading of patient-related outcomes since the team is firmly convinced that information is the first line therapy for any cancer patient and communication is one of the best ways to break down the wall of isolation surrounding the patient.
One of NET Italy’s goals is to provide the initial information on reference centers since a specific and appropriate approach involving more specialists is necessary. Last but not least, in a world going at an incredible speed where people have no time even for themselves, NET Italy is working hard, and its volunteers are happily offering their time to listen to patients and caregivers, supporting them by talking “their language” as they are perfectly aware of their needs and requirements.
Last year NET Italy implemented an ambitious training project targeted at general practitioners (it also included sarcomas and head & neck tumors). An approximate number of 500 healthcare professionals were covered in 2018 and the plan is for this project to be duplicated in other areas.
Other important initiatives put in place by NET Italy are the Open Day meetings: the first one has shown an interesting exchange of experiences between patients/caregivers and the multidisciplinary team of doctors taking care of NET patients. Based on the positive feedback, similar events will be arranged in other towns.
NET Italy Onlus is fighting on several fronts, but the main target is to continue giving support to patients, train and inform the medical community that usually has no contact with these rare diseases.
For NET Italy, becoming an INCA Member has offered a broader perspective: on one hand, access to global information, on the other, the opportunity to raise local issues with INCA.