More than 1,100 patients and caregivers from across the United States and internationally participated in NETRF’s 2026 Annual Patient and Caregiver Survey, sharing their experiences, concerns, and priorities.
These insights are playing an important role in shaping this year’s virtual Know Your NETs Patient and Caregiver Conference, which will take place on Saturday, July 18, 2026.
What We Learned
Across survey responses, several consistent themes emerged. Patients and caregivers expressed a strong need for:
- Clear information on treatment options and emerging therapies
- Improved access to specialists and coordinated care
- Greater awareness to support earlier diagnosis
- Practical guidance on symptom management and quality of life
- Opportunities for emotional support and peer connection
Many respondents also highlighted challenges navigating the healthcare system, including coordinating care across providers and accessing reliable, consistent information about their disease.
A Broader View of Living With Neuroendocrine Cancer
In addition to treatment-related topics, the survey underscored the importance of addressing the broader experience of living with neuroendocrine cancer. Patients and caregivers identified ongoing needs related to:
- Managing chronic symptoms and treatment side effects
- Nutrition, lifestyle, and supportive or integrative care approaches
- Mental health, coping, and caregiver support
- Financial and access-related barriers to care
These findings reflect the complexity of living with neuroendocrine cancer and the need for resources that support patients beyond clinical care alone.
Save the Date
NETRF is using these insights to guide the development of the 2026 Know Your NETs conference program. Planning is underway to ensure the meeting addresses the topics and concerns most relevant to the community.
Save the date: The Know Your NETs Patient and Caregiver Conference will take place on Saturday, July 18, 2026 from 11:00 a.m.– 4:00 p.m. ET.
Additional details, including the agenda and registration information, will be shared in the near future.
NETRF is grateful to everyone who took the time to participate in the survey. Your input is helping to shape not only this year’s conference, but also ongoing efforts to better support patients living with neuroendocrine cancer and their caregivers.