Neuroendocrine Cancer Awareness & World NET Cancer Day
WORLD NET Cancer Day
November 10
Think Zebras
Learn. Share. Make a Difference.
Explore Awareness
Understanding Neuroendocrine Cancer
Why Awareness Matters
Why We Think Zebras
The zebra stripes are a symbol of rare diseases and neuroendocrine cancer awareness.
The familiar medical saying about hearing hoofbeats and thinking horses reminds us that uncommon diagnoses can be overlooked. Sometimes the answer is zebra.
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Neuroendocrine cancer affects men, women & children. It does not discriminate.
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On average, it takes 5-7 years to accurately diagnose neuroendocrine cancer.
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NETs can be easily mistaken for IBS, gastritis, anxiety & asthma.
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NETs are more common than brain, ovarian or cervical cancer.
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Due in part to the rarity of the disease, neuroendocrine cancer is often misdiagnosed.
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Approximately 50% of NETs have already spread to other parts of the neuroendocrine system when the diagnosis is made.
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1/3 of NET patients are diagnosed incidentally while testing for another condition.
New NCF Resource:
NEC Resource Page
Dedicated Resources for Neuroendocrine Carcinoma (NEC)
Different Diagnoses. Support for Every Journey.
NCF has developed a dedicated resource page for individuals and families navigating a neuroendocrine carcinoma (NEC) diagnosis.
While NETs and NECs share neuroendocrine features, they differ in important ways, including their biology, progression, and treatment. Our new resource provides NEC-specific education, guidance, and support.
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Understanding your diagnosis
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Treatment planning
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Questions for your care team
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Pathology and diagnostic testing
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Research and clinical trials
NET Awareness Toolkit
INCA'S NET CANCER DAY MESSAGING
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NET Cancer Day is an annual event held on the 10th of November, created by the International Neuroendocrine Cancer Alliance (INCA) to increase awareness of neuroendocrine cancers (NETs) and to provide a voice to the NET community.
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On November 10th, INCA members, including the Neuroendocrine Cancer Foundation, from around the globe, promote resources to increase awareness about this often misdiagnosed cancer.
You can join this global community to raise awareness for NETs around the world.
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On Nov 10th, download an image below and post it on your social media or share it via email.
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For more tools and resources about NET Cancer Day, visit the INCA campaign page.
Closing the Gaps in Neuroendocrine Cancer Care
For people living with neuroendocrine cancer, navigating a complex healthcare system can be just as challenging as managing the disease itself. Finding knowledgeable specialists, coordinating care between providers, managing treatment costs, and accessing clinical trials remain significant obstacles for many patients and families.
At the Neuroendocrine Cancer Foundation (NCF), we believe that meaningful progress begins by listening to patients and ensuring their experiences help shape better care.
As part of this commitment, Heather Davis, NCF's Director of Community Engagement, has served on the North American Neuroendocrine Tumor Society (NANETS) NETPact Committee. NETPact, which stands for NET Patient Action Team, brings together healthcare professionals and patient advocates to address critical issues affecting the neuroendocrine cancer community, including access to care, reimbursement, and patient needs.
Through its 2024-2025 NETPact Survey, NANETS gathered insights from 180 NET patients and caregivers and 64 healthcare providers across North America. The results highlight significant gaps in specialized care, coordination between providers, financial accessibility, and clinical trial participation.
These findings reinforce the importance of collaboration between patients, advocates, healthcare professionals, and organizations like NCF.
We're proud to have contributed to the NETPact Committee's patient advocacy efforts and to help amplify findings that can inform meaningful improvements in neuroendocrine cancer care.
Five Key Findings from the NANETS NETPact Survey
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3 in 4 neuroendocrine cancer patients surveyed want a doctor who knows more about neuroendocrine cancer.
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84% of neuroendocrine cancer providers practice in academic medical centers, while 44% of patients travel over 250 miles to see a specialist, highlighting challenges accessing specialized care.
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82% of providers observe patients struggling with financial barriers to treatment, including distance and travel expenses.
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55% of patients report fragmented or poorly coordinated care, while 67% of providers agree that care coordination is a significant challenge.
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54% of patients were never informed about or invited to participate in a clinical trial, highlighting a need for greater awareness and access.
A referral is not the same as a transfer of care. Patients benefit when local healthcare teams and NET specialists collaborate, share expertise, and coordinate treatment.
The findings reinforce the need to improve patient education, expand access to specialists, strengthen care coordination, reduce financial barriers, and increase awareness of clinical trials.
Source and credit: North American Neuroendocrine Tumor Society (NANETS), NETPact Survey (2024–2025). Findings summarized from the NANETS educational brochure, Your Patients With Neuroendocrine Tumors Need You to Know. Survey findings reflect the respondents and should not be interpreted as representative of all NET patients or providers.
The Neuroendocrine Cancer Foundation supports neuroendocrine cancer patients & caregivers. Below are some of the resources the Neuroendocrine Cancer Foundation provides:
Healthcare Providers: Increase Awareness. Improve Understanding
The North American Neuroendocrine Tumor Society (NANETS) educates medical professionals on diagnosing and treating neuroendocrine cancer and supports research and innovation in the field.
NANETS provides the following educational programs, CMEs and resources for medical providers:
Go to nanets.net/ to learn more.
The International Neuroendocrine Cancer Alliance’s mission is to be the global advocate for neuroendocrine cancer patients. INCA provides NET patient information packs in 11 languages for patients, health professionals, and anyone wanting to better understand NETs.
The Think NENs Global Educational Program for Primary Care Physicians is a free, comprehensive e-learning program that provides everything primary care physicians need to know about diagnostics, treatment, and care of patients with neuroendocrine cancer. The 1-hour main module of three videos (each 20 minutes long) provides UEMS-EACCME® credit if the enclosed exam is completed successfully. Providers can register here: https://thinknensinprimarycare.incalliance.org/
Download & print brochures to bring to your providers.
Go to incalliance.org to learn more.