Advancing collaboration and sharing of best practices are both integral elements of the INCA Summit. Each INCA member organization briefly profiled their achievements and challenges, thus providing insight as to what works in awareness raising, advocacy and clinical trials development worldwide.
Short, punchy awareness-raising films about MEN2B were developed by the Association for Multiple Endocrine Neoplasia Disorders (AMEND) in 2019, addressing young people and facing the issue with life-long diagnosis.
The information gap in Kenya was addressed in 2019 by AZNETS – Africa Zebra Cancer Network Support, by organizing two NET Continuous Medical Education (CME) programs that reached 84 healthcare professionals at their workplace.
APOZ & Friends Bulgaria presented a working model of overcoming the shortages of the healthcare system in Bulgaria when it comes to NETs.
In France, APTED has organized 39 meetings with over 1500 NET patients in the span of 6 years. A new region, Bourgogne & Franche Comté is added to the organization’s program in 2019.
The Carcinoid Cancer Foundation, USA, shared the results of their 50th Anniversary Video Series produced in 2018. The 12 short movies showing lessons learnt and different life approaches of NET patients generated high reach on social media, as well as award nominations and awards in the USA.
In Norway, CarciNor put a special focus on cancer survivors with community services, discussions at the annual conference and interviews in their member magazine.
In 2018 CNETS Canada held the 1st Canadian NET Medical and Scientific Meeting to provide a forum for Canadian NET experts to meet & discuss issues of great relevance to Canadian NET patients.
In 2018 and 2019 NET Italy Onlus started to organize open days for patients to discuss therapeutic pathways with clinicians.
NET Patient Network Ireland launched a Disease Awareness Campaign in 2018 around NET Cancer Day with the key message being “Every patient should see or have their case reviewed by a NET specialist”. The campaign succeeded in having 19 publications in leading newspapers and journals in Ireland, with a total reach of approximately 1 200 000 people.
Some of the highlight for NET Patient Foundation UK in 2019: the first NPF NET news magazine got published, as well as ample resources about NETs and over 4000 copies were disseminated. The organization succeeded in funding the first coding of NET incidence & prevalence data and 6 NET research projects through NPF’s clinical fund.
The Middle East Neuroendocrine Tumor Society (MENETS) elaborated on their model of working from patients and caregivers to patients and caregivers. In 2019, the organization is building intense personalized programs and workshops designed to offer psychological support to both patients and caregivers for a better life with NETs.
Pheo Para Alliance showcased the PheoPara International Conference held in June 2019 attended by 160 patients in-person and more than 100 online via livestream.
The Victory NET Foundation shared its success story of raising £2 million through crowdfunding for the AdVince trial, which would explore the treatment potential in using a virus that specifically targets neuroendocrine cancer cells. The trial was launched in 2015.
vzw NET & MEN Kanker Belgium has recently published a book by a Belgium NET patient and popular writer that is going to be distributed this NET Cancer Day 2019 also on the biggest Belgium book fare which would happen on November 10th.
The Unicorn Foundation, Australia, presented their newest social media campaign Be Fair and the Planet Registry & App, an Australia-wide national clinical registry for NETs, that will collate key data to evaluate patient outcomes leading to valuable improvements in clinical practice, health outcomes, and facilitate collaborative research.
The Unicorn Foundation, New Zealand shared successes and hardships in their campaigning to get PRRT to New Zealand expecting positive developments soon and launch of the treatment in late 2020 – 2021.