International Neuroendocrine Cancer Alliance

2018 has been a year of growth and success for the International Neuroendocrine Cancer Alliance (INCA), as we strive for better research, standards of care, treatment and outcomes for NET patients around the world. Collaboration is the key principle underlying INCA work. Being an umbrella organisation of 20 patient advocacy and research groups from around the world, it is only by employing its network and effective partnerships with its constituents, that INCA can truly represent the global NET patient voice. As one of the INCA founding members, NET Patient Foundation UK has contributed massively with its knowledge, experience and commitment, to asserting INCA’s role over the years. 

World NET Cancer Day 2018 reached an even larger audience than ever before through more translations and reinvigorated website, and provided a fantastic platform for patients and carers from around the globe to get involved and talk about NETs. #Letstalkaboutnets, which has built significant momentum over the 3 years of consistent effort, generated over 12 million impressions across Facebook, Twitter and Instagram in the 2 weeks leading to NET Cancer Day.

Global Patient Resources

Bringing the findings of this research closer to all relevant stakeholders is a key priority, with a focus on reinforcing collaboration with the expert medical communities, INCA has committed to improve information for patients and education about NETs for healthcare professionals, as well as encouraging more support for research with  a stronger patient voice and more funding to help patients be active partners in the treatment process. To overcome the language barrier and spread the messages to as wide audience as possible, INCA has undertaken translating of the White Paper and all visual collateral including infographics and videos into 7 languages, on top of English. The resources are now available in Chinese (Mandarin), German, English, French, Italian, Japanese, Spanish and Russian to ensure further reach of INCA Unmet Needs Initiative. This assessment was supported through a grant from the Neuroendocrine Tumor Research Foundation (NETRF), a non-profit charitable organisation and INCA member, and the translations of all unmet needs materials were funded through the NETRF grant, as well as grants from Novartis, Ipsen and Pfizer.

This year INCA has been represented at all major medical society meetings, to voice the patient perspective.

Publications/Presentations:

ESMO – Best Poster Award

NANETS – e-poster presentation

APNETS – oral presentation

ENETS Conference 2019 – abstract submitted

European Society of Endocrinology Newsletter (Autumn edition 2018) – published feature article by INCA on the significance of collaboration with the medical experts in the context of the unmet needs survey findings. 

Meetings and Presentations:

First Global NETs Leadership Workshop – INCA Unmet Needs Initiative highlights – Simone Leyden, Palma de Mallorca, 29 November.

ENETS Advisory Board 2018 – INCA 2018 Achievements Update – Teodora Kolarova, Palma de Mallorca, 29 November.

2nd International Conference for Organisations Representing People with Chronic Lymphocytic Leukemia (CLL) – CLL Horizons & the 3rd International Conference for Organisations Representing People with Myeloproliferative Neoplasms.

(MPN) – MPN Horizons in Prague on September 2nd, attended by about 80 patient advocates from around the globe – Teodora Kolarova presented the INCA Unmet Needs initiative and its impact on evidence-based advocacy.

European School of Oncology (ESO) Masterclass in Cancer Patient Advocacy 2018 – 56 patient advocacy leaders representing 23 European cancer patient networks gathered in Lisbon at the end of February 2018 for the 3rd edition of the ESO Masterclass “Working Towards Stronger and More Effective Advocacy in Europe”. Teodora Kolarova showcased the results of the INCA Survey on Unmet Needs at the Evidence-based advocacy: how to increase impact session on February 25, 2018. The audience was impressed by the scope of the project and the huge potential for further reach, with the translations of all resources into 7 languages.

Joint ENETS/INCA Symposium – March 9, 2018, Barcelona, Spain – At the second Patient-Physician Symposium, INCA and medical leaders discussed a roadmap of actions to address unmet needs of NET Patients. Over 150 conference participants, including some of the thought-leaders in the NET medical community were in attendance, which clearly indicated the growing appreciation of the role patients can play. The focus was on unmet needs in the “Patient Pathway” – the patient information gap, ways to improve the information delivered to patients throughout the treatment journey, as well as access to appropriate care. Another key topic was engaging patients in research from trial design to clinical trials. INCA and ENETS leaders have pledged to form task forces to identify concrete steps that can be taken to address the issues that impede optimal care and research, and to invite the other NET medical societies (NANETS, COMMNETS, APNETS) to join INCA.

INCA AGM and Summit – March 5-6, 2018, Barcelona, Spain – The Annual INCA General Membership Meeting and Members Summit gathered 16 member organizations from 14 countries around the globe in Barcelona on March 5-6, just two days before the start of the 15th ENETS Conference. In addition to a review of NET Cancer Day 2017 and the Unmet Needs initiative, as well as draft plans for 2018, a significant review of the INCA strategic plan was carried out by way of a facilitated discussion and breakout group work leading to consensus on potential 2018-2022 objectives. Initial action plans to meet patients’ information needs and engage patients in the design and support of research will be developed by two task forces. The excitement sparked by the feeling of bonding and the recognition of the power we have as a community was palpable during the meeting.

First Global NET Leadership Workshop – November 29, Palma de Mallorca, Spain – INCA, represented by its current President, Simone Leyden, had an instrumental role at the First Global NETs Leadership Workshop, whose key objective was to provide a platform to work together and identify common and unmet needs from a global perspective as well as potential joint initiatives to overcome these. All major NET medical societies were keen to collaborate with INCA in addressing patients’ unmet needs: APNETS, COMMNETS, CSNETS, CNETS, JNETS, NANETS, NET Initiatives in South America.

Teodora Kolarova, Executive Director, INCA