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.

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.

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 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.

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