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INCA Monthly Newsletter - March 2020 News Update
INCA Members' News

The 8th INCA Summit Was Held Online

In these exceptional circumstances worldwide, the 8th INCA Summit was adapted to a virtual format and took place on Thursday, April 2nd. Due to the global nature of the organization and to best accommodate membership representatives and partners from various corners of the world, a two-hour webinar session was organized to provide detailed information on INCA’s achievements in 2019 and to present suggestions to all member organizations for future activities to shape the new INCA strategy for 2020 and beyond.

INCA President, Catherine Bouvier opened the 8th INCA Summit by acknowledging the efforts of all who continuously dedicate their time and energy for the benefit of the neuroendocrine cancer and genetic NETs community globally. Mrs. Bouvier also showed appreciation for INCA’s respected sponsors: IPSEN, Novartis, ITM and Advanced Accelerator Applications. INCA is incredibly grateful for their continued support, especially during these challenging times.

The INCA President outlined INCA’s vision and mission, and key strategic pillars of activity: raising awareness about neuroendocrine cancer and genetic NETs, securing patient access to optimal treatment and care and advancing NET research.

INCA Executive Director, Teodora Kolarova presented the most important achievements of INCA in 2019, some of which are: First open-access manuscript, ENETS First Award for Poster in the Clinical Category, INCA’s membership expansion to 6 continents, SCAN, and the increased global impact of NET Cancer Day on its 10th anniversary.

Chairs of the INCA Committees in charge of Communications, Research, Access and Membership presented their progress, achievements and goals. What lies ahead? A new focus on non–NEN medical communities, further expanding the INCA membership, organizing trainings on research and clinical trials for patient advocates, more data-driven evidence to be showcased at medical conferences outside of the neuroendocrine medical community, and much more.

The INCA Strategy will now be updated with the valuable input from the entire membership of the organization.


The International Neuroendocrine Cancer Alliance understands the gravity of the situation worldwide and deeply appreciates the global cooperation underway in respect to managing the COVID-19 pandemic. INCA fully supports the measures of social distancing taken by the governments as these support the efforts to minimize the impact of COVID-19 over the population and lessen the burden on the healthcare system.

In these turbulent times due to the COVID-19 outbreak, some of the key challenges for all patients, including neuroendocrine cancer and genetic NET patients will be:
-  How to maintain treatments and follow-ups and to keep contact with their healthcare professionals?
-  How to maintain social distancing and continue treatments/disease management?
- How to deal with the increasing anxiety typical for NETs, now additionally triggered by the growing uncertainty and feeling of loneliness and isolation?
INCA’s response to these will be to provide practical advice on establishing a new routine for communication with the healthcare professionals. The routine will include specific steps and coming up with a new plan for managing the condition.
INCA invites all its members and partners to join the campaign and support the communication efforts to better equip neuroendocrine cancer and genetic NET patients in these extraordinary challenging times.
#Covid19 #LetsTalkAboutNETs #NeuroendocrineCancer

INCA believes it is vital to highlight the support available to you in your local communities and globally. The following resources, collated on INCA website, can provide you with some guidance.

First Virtual ENETS Conference

The 17th Annual ENETS Conference took place in a virtual format on March 11-13, 2020. Over 350 attendees watched 11 sessions in total, delivered by 46 speakers from all over the world. In the midst of the COVID-19 outbreak, ENETS conducted a top-quality scientific meeting and also made all accepted abstracts available on their website. 362 abstracts were submitted to this year’s conference.
INCA was very proud to see Prof. Robert Jensen acknowledge the INCA SCAN survey abstract among the Top 10 Best ENETS 2020 Abstracts – especially highlighting the importance of early diagnosis and recognition of NET experts:  

  • Almost half of patients were initially misdiagnosed (44% [1043/2359])
  • 27% (640/2359) received a NET diagnosis first  time and 26% (606/2359) diagnosed incidentally
  • Mean time to NET diagnosis for misdiagnosed patients was 5 years
  • Four out of five misdiagnosed patients (81% [847/1042) failed to receive a diagnosis within 1 year
  • A quarter (24% 570/2359) of patients had not heard of NET specialists

At the end of the conference, Prof. Dermot O’Toole warmly welcomed the new ENETS Chair – Prof. Marianne Pavel, senior physician and top-tier leader in NETs who has mainly focused on NETs for the last 20 years. Prof. O’Toole highlighted Prof. Pavel’s enormous dedication to the accumulating body of knowledge about NETs, and her exceptional talent of being champion for NET patients. Marianne Pavel thanked Dermot O’Toole for his committed leadership and acknowledged the extraordinary work that he and the ENETS Executive and management team did to conduct the conference virtually in such a short period of time. Looking ahead at ENETS future priorities, Marianne Pavel highlighted the continued focus on scientific work, facilitating collaborations, and building the next generation of NET experts.

INCA would like to commend both Dermot and Marianne on their exceptional leadership, patient-driven perspective, and global vision. We are grateful for their partnership and friendship, and look forward to advancing our collaboration to help improve outcomes for NET patients.  

The INCA ENETS Joint Symposium will be scheduled to take place later in the year.

INCA Members' News

   COVID-19 and MEN Research

AMEND has developed a patient questionnaire for people with multiple endocrine neoplasia disorders (GenNETs) who HAVE HAD Coronavirus.  The survey can be completed by patients who have recovered, or by relatives or health professionals for anyone who may sadly have died.  AMEND is making the question file available to anyone on request, so that you can set up a similar survey in your own country. 

Please contact AMEND CEO, Jo Grey ( for more information.

CCF Hosts COVID-19: Your Health and Safety Facebook Live Event


The Carcinoid Cancer Foundation (CCF) hostеа a special Facebook Live event on March 30th at 12:00 noon Eastern Time - COVID-19: Your Health and Safety, featuring neuroendocrine tumor (NET) expert Aman Chauhan, MD for an in-depth discussion on the topic.

Watch the full video here.

NeuroEndocrine Cancer Australia at ENETS


At the ENETS meeting in March, NeuroEndocrine Cancer Australia were pleased to be involved in 6 scientific abstracts, their highest contribution to the European Neuroendocrine Tumor Society (ENETS) to date. Despite ENETS not taking place as a physical meeting, the organizers did a great job of conducting a virtual meeting, and allowing for abstracts and posters to still be able to be promoted.

•    GP Education Research - leading planned online modules for Australian GP’s through 2020 and beyond
•   CONTROL NETs clinical trial results - finding the optimal treatment to improve disease control in patients with advanced Neuroendocrine tumors (NETs)
•    Financial Toxicity - the financial implications on Australian’s living with neuroendocrine tumors
•    PLANET Registry – Peter MacCallum Data experience
•    INCA SCAN Survey – Assessment of Early Diagnosis
•   Nutritional Status and Considerations for Patients Diagnosed with a Gastroenteropancreatic Neuroendocrine Tumor - Nutrition in NETs study funded by NeuroEndocrine Cancer Australia

Check here for more information.

UKINETS Chair on Key Concerns for NET Patients

The Chair of UK and Ireland Neuroendocrine Tumor Society (UKINETS), Professor John Newell-Price addressed some of the main concerns of the neuroendocrine cancer and multiple endocrine neoplasia communities, which were brought to his attention by AMEND and Neuroendocrine Cancer UK. He shares information that can help improve management of patient conditions in these incredibly difficult circumstances both for patients and healthcare professionals. Working out ways to ensure that patients receive the best quality of care possible during the current healthcare crisis everywhere needs to be a priority.

Watch the full video here.

Milestone Achievements Announced in NET Cell Line Development

The Neuroendocrine Tumor Research Foundation (NETRF) reports progress in the development of neuroendocrine tumor (NET) cell lines to help eliminate a decades-old obstacle in laboratory research. To stimulate progress in NET cell lines, NETRF established a Cell Line Prize, funded cell line research, and launched a collaboration with a nationally known research institute. Each of these initiatives has succeeded in establishing NET cell lines.

When the Neuroendocrine Tumor Research Foundation (NETRF) was established in 2005, one of the obstacles facing NET research was the lack of neuroendocrine tumor (NET) cell lines. Since then, NETRF has funded and initiated projects to generate NET cell lines. Now NETRF is excited to announce three milestones in the quest to establish these essential research tools.

“The lack of effective NET cell lines has been a critical concern to NETRF because it limited advancement in the field,” said John Kanki, PhD, NETRF Director of Research. “Today, we are excited to report outstanding, measurable success.”

Learn more here.

Pheo Para Alliance Patient Education Webinar on Surgery


On April 22, the Pheo Para Alliance will hold a live webinar on pheo para surgery. The Live Webinar Series gives patients and their families an opportunity to tune in and interact with experts on a variety of pheo para topics. Drs. Michael W. Yeh and Masha J. Livhits of UCLA will be the featured experts.

Patients and their families will have an opportunity to ask questions. Submit your questions beforehand during the registration process or ask questions live.

Register for the webinar here.

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