Calls to Action
Every question you’ve asked, every challenge you’ve faced, and every choice you’ve made along the way holds meaningful insight. Patients and caregivers don’t just navigate care — you influence it.
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Your voice helps researchers, clinicians, and advocates better understand what matters most, what’s working, and what must change.
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By sharing your perspectives, you play an active role in moving neuroendocrine cancer care forward. You help ensure that future treatment decisions, support resources, and research priorities reflect the real needs of the people living this journey every day.
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Your lived experience is powerful — and it deserves to be heard.
Take action.
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CURRENT OPPORTUNITIES
NET Experience Survey
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If you are living with or caring for someone living with neuroendocrine tumors (NETs), we invite you to share your experiences through an online survey.
While there is no compensation for completing this survey, your responses will help us better understand the needs of people living with NETs. The survey will take 3-5 minutes to complete, and your answers will remain anonymous.
We thank you for considering participating in this survey. Your responses are impactful.​​
Study by Researchers at the University of Alabama at Birmingham
(IRB-300015226-002)
February, 2026
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Researchers at the University of Alabama at Birmingham (UAB) are conducting an anonymous, IRB-approved survey to better understand how patients experience conversations about cancer surgery, including whether what matters most to patients is addressed during treatment decision-making. The goal of this study is to help inform more patient-centered communication and improve how patients are supported when making treatment decisions.
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Important note:
When asked to select the option that best reflects your primary tumor site, neuroendocrine cancer / neuroendocrine tumor (NET) / neuroendocrine carcinoma is not listed as a separate category. Please select “Other” and, in the open-text field, note “Neuroendocrine tumor” or “Neuroendocrine cancer.” People with all types of neuroendocrine cancers are welcome to participate, including well-differentiated NETs, neuroendocrine carcinoma, pheochromocytoma, and paraganglioma.
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Who can participate:
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Adults diagnosed with cancer within the past 2 years
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Have met with a surgeon to discuss possible cancer surgery
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Time commitment: About 10 minutes
Anonymous and voluntary
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Your perspective can help improve patient-centered communication for future patients.
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Take the survey here:
https://uab.co1.qualtrics.com/jfe/form/SV_1OmDi6x2VzojfmK​
Diagnosed with Insulinoma?
Market Research Opportunity
November, 2025
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We are seeking individuals diagnosed with insulinoma to participate in an important research study. The goal of this project is to better understand the real-life experiences of people living with insulinoma — especially how hypoglycemia affects daily life, routines, relationships, and well-being.
What Participation Involves
Participants will take part in a one-hour confidential interview with Mike Reilly, an experienced and independent market research professional with extensive knowledge of insulinoma. Mike is dedicated to creating a respectful, comfortable experience, and all information shared will remain strictly anonymous.
Compensation and Donation
As a thank-you for your time:
- Participants will receive a $250 honorarium
- OLG Research will donate an additional $100 to the Neuroendocrine Cancer Foundation for each completed interview
Interested in Participating?
Please contact Nicole Maurer at OLG Research:
Email: nmaurer@olgresearch.com
Phone: +1-973-575-0019
CLOSED
Could YOU be in Crinetics' Next Carcinoid Syndrome Patient Leadership Council?
December, 2025
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Your experiences matter—and they can help shape the future of treatment.
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NCF is sharing an opportunity to participate in the Crinetics Patient Leadership Council, a small group of patients and care partners who meet virtually throughout the year to share insights about living with rare disease. Council members provide input on the patient journey, treatment experiences, educational needs, and how clinical trials are designed and communicated.
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The Council will consist of 8–10 patients or care partners who meet virtually 3–4 times per year, with the possibility of additional meetings as needed. Members commit to a one-year term (with the option to extend to two years) and are compensated for their time.
All conversations are respectful, confidential, and focused on ensuring patient perspectives guide meaningful progress.
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Interested in learning more or applying?
This is a chance to turn your lived experience into impact and help improve care for others.​
VOICE epNEC Care Partner Survey
February, 2026
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​We invite you to take part in an online survey to better understand your role as a care partner/caregiver in supporting an individual with neuroendocrine carcinoma. We want to learn more about the challenges you encounter while providing care and the areas where care and support can be improved.​
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If you are interested, please click on the link or scan the QR code below to enter your email address: https://s-hab.medefield.com/wix/p294869318978.aspx
We’ll send you a short questionnaire to confirm your eligibility, along with an informed consent form that explains the study in more detail.
If you qualify and choose to participate, you will be directed to the full survey. Upon completing the survey, you will receive an honorarium as a thank-you for your time and contribution.
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Please note: The survey will come from Paradigm Sample (invite@decipherinc.com) within 2-3 days. Please keep an eye on your inbox and check your spam or junk folder just in case.
Your email will be used solely for the purpose of sending the survey invitation and will
be deleted after the study concludes. Your information will be kept strictly confidential.
Thank you for considering taking part in this important study.​​
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VOICE epNEC Patient Survey
November, 2025
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People living with neuroendocrine carcinoma (epNEC) are invited to share their experiences through an online research survey. Patient insights will help inform future care, resources, and support for the neuroendocrine cancer community.
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If you are interested, click the link below (or scan the QR code) to enter your email address. You will receive a brief eligibility questionnaire and additional study details. If eligible, you will be invited to complete the full survey.
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Survey invitations will be sent from invite@decipherinc.com within 2–3 days.
Please check your spam or junk folder if needed. Your email will be used only to send the survey invitation and will be deleted after the study concludes.
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Thank you for considering taking part in this important study.
Have You been Treated With AlphaMedix™?​
November, 2025
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We’re looking for patients who would like to share their experiences in a one-hour, one-on-one interview with a company that wants to better understand the patient journey.
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No preparation needed
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An opportunity to share your story
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Participants will be compensated at fair market value
Your voice and experience matter!
Interested in Participating?
Please contact Lisa Yean, Director of Programs and Outreach at NCF: