The Association of Patients with Neuroendocrine Tumors (NET-ESPAÑA) was born in 2016, when a group of patients were moved by the need to work in defence of NET patients, starting up an collaborative project. Blanca Guaras, President, on NET-ESPAÑA’s priorities: “The fundamental pillars of our work are: communication, knowledge and participation. Over these three years, we have created a strong platform to support patients, with presence throughout the country. Our aim is to see it grow day by day, and continue to connect patients.

Our projects and activities have different objectives. On the one hand, it is necessary to make our disease visible with awareness campaigns  and dissemination of information within the healthcare and social fields: ‘Change the colour of NETs’. We consider the training of professionals to be a priority for an earlier diagnosis, because ‘If you do not suspect it, you cannot detect it’. On the other hand, education of patients and their relatives, through shared learning spaces, provides us with the necessary tools to improve our quality of life and to better cope with our disease.

We work to improve the quality of care, and we are the voice of patients with neuroendocrine tumors in different forums,  defending our right to have access to experts, the best diagnostic tests and the most innovative treatments, without administrative barriers within the Spanish territory. And finally, we collaborate with the experts of GETNE (Spanish Group for Neuroendocrine Tumors), to encourage the participation of patients in clinical trials.”