INCA President , NET Patient Network Ireland
INCA Board Member, Neuroendocrine Cancer UK
levels to enable patients to raise their voice
INCA Board Member from 2019 to 2022 , CNETS, Canada
INCA is the global voice of NET patients and is making a truly meaningful impact with awareness, advocacy, and patient directed research. INCA has seen incredible success developing collaborations with key stakeholders including world renowned NET physicians, with a focus on improving the lives of those living with NETs. This is a special community of passionate and dedicated NET organizations from around the globe and CNETS is honoured to be a member and a participant in the evolution of true patient engagement and empowerment in the NET space.
INCA Board Member from 2016 to 2021, PanCan, Japan
INCA Board Member - APTED, France
Alone we go faster, together we go further. That’s why we have been an INCA member since 2012.
INCA offers a space for information exchange on NET treatments, research, access, and most importantly, a place for sharing best practices with patients and healthcare professionals within our organization.
The rarity of the NET disease makes the sharing of reliable information essential, and this is what INCA brings us. We learn from each other, there is no better way.
Dirk Van Genechten
INCA Board Member from 2017 to 2022, VZW NET&MEN Kanker, Belgium
The best way to prevent metastasis is early detection. This ensures the best possible outcome for NEN patients. For this we need to raise awareness, not only to the first levels of HCPs (GPs) but also to the second levels (specialists).
The tailor-made worldwide surveys organised by INCA, “Unmet needs” and “SCAN”, give a better picture on how to improve the situation for NEN patients.
The actions taken by INCA on the results, like the raising awareness project and the numerous posters published will be without any doubt beneficial to both patients and HCP’s.
I take much pride in being an active member of INCA for many years.
INCA Board Member from 2016 to 2021, NeuroEndocrine Cancer Australia
INCA Executive Director
Professor of Surgery and Division Director of Surgical Oncology and Endocrine Surgery at the University of Iowa - NANETS President Emeritus
INCA plays an important role in patient advocacy issues, and distributes very useful educational content to patients around the globe. They have also performed surveys of both physicians and patients to identify gaps in diagnosis and treatment, and looked closely at patterns of care geographically and socioeconomically. In the United States, they are closely involved with the Neuroendocrine Tumor Research Foundation, Carcinoid Cancer Foundation, and the Pheo Para Alliance, and have made substantial contributions to the NET community through their diverse activities.
Global NET Patient Information Pack
Associate Professor of Medicine at the University of Toronto, CommNETS Co-chair
Co-founder of the Susan Leslie Clinic for Neuroendocrine Cancers at the Odette Cancer Centre Sunnybrook Health Sciences Centre
Global NET Patient Survey
Professorial Fellow of the University of Melbourne - Director of the Centre for Molecular Imaging and Therapeutic Nuclear Medicine at the Peter MacCallum Cancer Centre in Melbourne, Australia
We learned, just recently, that the New Zealand Health Department has committed to funding PRRT in their country. Although patients from that country previously came, using their own financial resources, to Australia for scans, consultations and PRRT, if appropriate, through the advocacy of the Unicorn Foundation New Zealand, these are all now available to patients within their own country. Without patient advocacy, which lies at the heart of all INCA does, this could never have happened. The support that INCA provides for national programs like the Unicorn Foundation New Zealand and Neuroendocrine Cancer Australia is invaluable but, more importantly, its direct outreach to patients leaves them better educated and empowered to seek the best care possible.
My thanks are ever with you and all the team at INCA
Senior Dietitian, Upper Gastrointestinal and NET Unit at Peter MacCallum Cancer Centre in Melbourne