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The 11th INCA Global NET Patient Advocate Summit took place in Bologna, Italy, on 11th – 12th September 2023. Over 30 representatives of INCA member organizations across the globe, speakers from ENETS and NANETS and the Italian Association for Neuroendocrine Tumors Ita.net, gathered to discuss ways to improve NET awareness and access to optimal diagnostics and care, as well as advance patient-driven research.

The Summit kicked off with a motivational overview of INCA achievements in growing the global NET patient voice for the past year, delivered by Teodora Kolarova, INCA Executive Director, followed by Mark McDonnell, INCA President, who charted out the way forward across the INCA key strategic pillars.

Teodora Kolarova, INCA Executive Director

The first day focused on sharing lessons learned and challenges in raising NET awareness and promoting patient involvement in NET research design.

Improving NET awareness: Members’ best practices and lessons learned

All INCA member organizations provide information and support to patients and caregivers and they also disseminate knowledge via websites and social media, events and collaboration with partners in the medical associations and the cancer advocacy world. Continuous joint initiatives with hospitals, primary care physicians, nurse associations and reaching out to medical students to inspire their interest in NETs were outlined as efficient ways to improve awareness of neuroendocrine cancer among healthcare professionals and ultimately – the patient journey.

Raising Awareness Globally: Synergy between global patient advocate community and NET experts

Stephanie Alband

Stephanie Alband

Stephanie Alband, INCA Communications Committee Chair, gave an overview of INCA awareness and information activities, highlighting the growing outreach to healthcare professionals and general audience with NETInfo factsheets in 10 languages, soon to be enriched with an 11th language version (Portuguese). INCA website, newsletter, social media channels and multilingual information assets consistently grow their visibility globally.

Prof. Eva Tiensuu Janson ENETS Chair

Prof. Eva Tiensuu Janson

Prof. Eva Tiensuu Janson, ENETS Chair, spoke about the joint initiatives between INCA and ENETS that have been instrumental in improving knowledge of NETs in the medical profession, as well as the general public, and posted for discussion new strategic directions to advance the fruitful collaboration.

Prof Francesco Panzuto

Prof. Francesco Panzuto

Prof. Francesco Panzuto, Chair of the Italian Association for Neuroendocrine Tumors – It.a.net, presented the local activities highlighting how joint efforts with NET Italy ETS contribute to better understanding of NETs.

Research and Clinical Trials: Facilitating meaningful involvement of patients in NET research and tackling the quality-of-life issue in clinical trials

Ron Hollander, INCA Research Committee Chair made and overview of INCA strategic commitment towards collaboration with NET research leaders and educating patients to be involved in clinical trials design, as well as facilitating better access to NET trials information.

dr. Pamela Kunz, NANETS President

NANETS President Dr. Pamela Kunz addressed the global NET patient community with a powerful message about the impact of NET experts partnering with patients in NET patient care, research and education. She pointed out that patients belong in all the places where decisions are made about them.

Dr. Jaydira Del Rivero

Dr. Jaydira Del Rivero

Dr. Jaydira Del Rivero from the National Cancer Institute offered a comprehensive mapping of the practice-changing clinical trials in NETs. She outlined the current stage of NETs understanding and stressed that patient advocates have a critical role in supporting researchers’ efforts to improve patient outcomes and in shaping practice-changing clinical trials.

Ancora.ai

Data insights from the observations in usage of the NET clinical trial search using Artificial Intelligence (AI) were provided by Danielle Ralic, CEO, Ancora.ai. The NET clinical finder tool, which is a result of the partnership between Ancora.ai and NorCal CarciNET Community is available on the INCA website.

INCA Research Pillar discussion

INCA members representatives had an engaged brainstorming session on formulating future projects to improve patient knowledge and understanding of clinical trials; tackle the quality-of-life aspect in research protocols; and educate a community of patient research advocates.

The second day of the Summit focused on sharing local best practices and challenges in improving access to optimal care and employing evidence-based advocacy.

Excellent examples of pursuing local models of cooperation in working with the medical community and institutions for consistent long-term results were presented to facilitate exchange of experience between members. Forging ahead optimal patient pathways, national surveys, scalable model to enhance knowledge at rural hospitals, bringing up patient issues with scientists, and others – those were exemplary approaches to showcase how INCA members have advanced in advocacy in action.

Access to optimal treatment and care and evidence-based advocacy: Novel projects and concepts

Dr. Sugandha Dureja

Dr. Sugandha Dureja

Dr. Sugandha Dureja, INCA Access Committee Chair, made an overview of the 2023 projects’ progress in improving NET patient access to optimal treatment and care. The review article by INCA titled “Global Challenges in Access to Diagnostics and Treatment for Neuroendocrine Tumor (NET) Patients” published in the Journal of Neuroendocrinology, was highlighted. The most ambitious and novel project, expected by the community, is the Think NENs Global Educational Program for Primary Care Physicians. The program will be CME-accredited and offered as an online course in 6 languages: English, French, German, Hindi, Italian, and Spanish.

Dr. David Bartlett

Dr. David Bartlett

The community was inspired by the moving talk by Dr. David Bartlett, a general practitioner from UK, who is a key consultant of the Think NENs educational program. He explained that to have NENs on their radar, primary care physicians should have the capacity to doubt their certainty, as well as consider that collectively rare diseases occur commonly.

A vigorous brainstorming discussion among INCA members outlined the future activities in promoting the Think NENs program both locally and globally, as well as the priorities for the next edition of the Survey of Challenges in Access to Diagnostics and Treatments for NET Patients (SCAN).

Neil Bertelsen

Neil Bertelsen

How to develop successful advocacy and policy engagement strategies to improve access – valuable insights and practical tips were provided by Neil Bertelsen, PFMD/HTAi. He made the case that patients should work in partnership with decision-makers to find solutions and drive lasting change.

NET Cancer Day 2023 – 2024

NET Cancer Day 2023 - 2024

Sneak peek of the NET Cancer Day 2023 assets and brainstorming to conceptualize the next year’s global communication campaign were the highlights of a special session, moderated by Stephanie Alband, INCA Communications Committee Chair.

The 11th INCA Global NET Patient Advocate Summit was full of creative energy, inspiring both INCA members and partners for more meaningful achievements.

Huge thanks to all INCA members and distinguished invited speakers for the indispensable contribution to the 11th INCA Global NET Patient Advocate Summit! INCA is deeply grateful to its sponsors – AAA, Ipsen, ITM, RayzeBio, SERB Pharmaceuticals, Camurus and Curium, for their support.