For the first time, the International Neuroendocrine Cancer Alliance (INCA), a global voice in support of neuroendocrine cancer patients, played a role in the 14th Annual European Neuroendocrine Tumor Society (ENETS) Conference. A joint INCA/ENETS symposium was held on the final day of the ENETS conference to prioritize and address unmet needs.
Understanding unmet needs
INCA represents 20 organizations from 17 countries, mostly patient support and advocacy groups. The joint INCA/ENETS symposium opened a dramatic new dimension of collaboration between international stakeholders. More than 200 participants from across the globe attended the INCA/ENETS symposium. The gathering helped identify unmet needs and establish shared goals.
“It is a bold and broad effort to uncover, align, and document the needs of the international NET community,” said Ron Hollander, symposium co-chair, NETRF executive director, and president of INCA. “We want to bring the needs of the NET community into focus for the world.”
NETRF in part funded this international needs assessment, to be captured in a formal white paper. The joint symposium was one component of this larger effort to solicit input from different countries and various perspectives. Before the event, 400 informed individuals were surveyed on their views on the state of NET patient care and research.
Following the symposium, INCA hosted a follow-up summit with George Fisher, MD, PhD, co-chair NETRF’s Board of Scientific Advisors and NET medical/scientific leaders from across the globe representing different perspectives:
- European Neuroendocrine Tumor Society (ENETS): professional association of physicians and researchers.
- North American Neuroendocrine Tumor Society (NANETS): a medical society of healthcare professionals devoted to publishing consensus guidelines on the proper management of NETS.
- Commonwealth Neuroendocrine Tumor Group (CommNETS): NET clinicians, researchers, patients, and advocates from across Australia, New Zealand, and Canada.
“We have given a platform for the most influential NET voices in the world,” said Hollander. “Their message will be captured and shared to shed light on an overlooked group of diseases.”
INCA plans to include input from the survey, symposium, and summit in the forthcoming white paper. Watch NETRF’s E-Update for news of its release and findings.
Watch the summit conversation on unmet needs in the worldwide NET community. How can we improve care? Why do so few patients get the information they need? What can we accomplish together? https://itr8.wistia.com/medias/d2a8m191hw