This year, for the first time INCA (International Neuroendocrine Cancer Alliance) and ENETs held a joint symposium between NET physicians and patient advocates from around the world, at the ENETS conference in Barcelona.


INCA ENETS Symposium 2017

Blog post by Simone Leyden
Barcelona 8-10 March




Inca enets news

Simone Leyden is CEO at the Unicorn Foundation, Australia. Simone advocates for greater access to treatments and diagnostics, raises funds for the NET Nurse Support Service and research, and raises awareness about NET cancers within the medical community and general public. Simone is President Elect at the International Neuroendocrine Cancer Alliance (INCA).

Unmet Needs in NET Care and Research: Priorities for Actions.

 Over the previous months, data was collected from three online surveys (patient leader, patient and family, healthcare professionals) with over 400 respondents in total from 25 countries. Interviews of 40 to 90 minutes were also conducted with 8 medical leaders and 6 patient leaders to provide information for the Whitepaper. Included also were representatives from  key international medical societies ENETS, NANETS (North American Neuroendocrine Tumor Society) and CommNETS (Commonwealth Neuroendocrine Tumor Society) who kindly contributed their time and expertise. Special thanks to Prof Rod Hicks for sitting on the panel at this joint session.

The results of the survey and whitepaper from the patient perspective were presented to close to 200 people by UF’s Simone Leyden, with Prof Bertram Wiedenmann of Germany (UF Research Advisory Panel member) presenting on the unmet needs from the physcians’ perspective. Some of the key insights can be seen in the below slide.


One of the most debated insights


From INCA member organizations (left); Bill Claxton, CNETS Singapore. Dr. Sugandha Dureja, CNETS India, Yoshiyuki Majima, PanCan Japan.


One of the most debated insights was the dissemination and relevance of information on NETs and treatments to patients at diagnosis and throughout the journey. This is one of the areas that it was agreed to collaborate to improve, looking at best practice from other cancer groups and creating our own. Research priorities are also an area that patients and physicians need to address to meet expectations on both sides. Special thanks to the expert panel including UF board member Prof Rod Hicks.

We look forward to continuing to contribute to the whitepaper that will be released in the European Spring of 2017. We also would like to thank the NET Research Foundation for their grant to conduct these activities as well as the current ENETs Chairman, Prof Massimo Falconi for his incredible support of the symposium and the ENETs organising committee.

At the end of the conference INCA held their annual patient summit, continuing the theme with experts on collaboration in research. We heard from an expert panel with representatives; Prof Dermot O’Toole (ENETs), Dr David Metz (NANETs), Georg Fisher (NANETs) and Eva Segalov (COMMNETs) about the opportunities and barriers to patient involvement. Special thanks to Prof Eva Segalov for making herself available for the panel.

The 20 member patient groups each had the opportunity to present key activities from the last year and we also workshopped projects that we will be working on over the next year.  Good news is that the “Let’s Talk Abount NETs” campaign was a great success across the globe and we look forward to making it bigger and better in 2017.

For the full program of the 14th annual ENETs conference please click below and to see the webcasts of the meeting click here





ENETS, the European Neuroendocrine Tumor Society

ENETS, the European Neuroendocrine Tumor Society was founded in 2004 and the society members, currently numbering nearly 1,400, bring a variety of expertise from such fields as oncology, pathology, radiology, nuclear medicine, endocrinology, surgery and gastroenterology to ENETS. Neuroendocrine tumors (NETs) present numerous complex clinical problems. Due to their relatively rare occurrence, research and patient care guidelines since the 1990s have been lacking. As a result ENETS was founded. Learn more at www.enets


The International Neuroendocrine Cancer Alliance’s (INCA) Blog

INCA photos from INCA ENETS Symposium 2017 at Flickr