In medicine, the zebra has come to represent a rare disease and, to some extent, the challenges of a unique disease that defies uniformity. At the North American Neuroendocrine Tumor Society (NANETS) 2023 Multidisciplinary NET Medical Symposium, several presentations dealt with innovative strategies to “take on the zebra” of neuroendocrine tumors (NETs) to raise awareness and advance the cause.

Following these proceedings, featured expert Jennifer R. Eads, MD, was interviewed by Conference Reporter Editor-in-Chief Tom Iarocci, MD. Clinical perspectives on this topic from Dr Eads are presented here.

As discussed during my presentation on building a NETs program at the NANETS 2023 Multidisciplinary NET Medical Symposium, both clinicians and patients play a big role in raising awareness of NETs. This is a disease that definitely requires a multidisciplinary team and having dedicated interest from multiple specialties and ancillary services. Additionally, the treatment of a patient with NETs is a two-way street between the community and a tertiary care center such as a NETs Center of Excellence, whereby both benefit from working together. Clinicians in the community might encounter only 1 to 2 patients per year who have NETs, so they often appreciate having a multidisciplinary team at a large center giving recommendations. Often, the patient can take those recommendations back to their primary oncologist to have their treatment implemented there, because it is not practical or necessary for all patients to be treated at a large center.

Patients with NETs, like those with other rare diseases, are often key drivers of information dissemination and awareness. They tend to be internet savvy and to do a lot of research about their disease. They are also a part of a very cohesive online community where they are able to share their news and information. As part of our large NET program at the University of Pennsylvania (UPenn), we have an annual patient and caregiver conference that includes educational talks at the patient level. These sessions are rich in content for patients and their caregivers, and they allow us to impart our knowledge and share information about our research program, patient care services, and ancillary services. People can attend in person or virtually, and we have participants from all over the country and other parts of the world.

Medical education on NETs is another integral part of raising awareness and building for success. Not all clinicians can travel and spend 3 days, for example, at a neuroendocrine oncology conference on a yearly basis, so NANETs holds several regional conferences each year, in addition to their annual meeting. Such regional conferences can be more of a 1-day Continuing Medical Education event, providing a broad overview of NET management.

For trainees, I want to relay what a great culture the NET community has. There are national and international collaborators who form a very tight, friendly community. We all know that we need each other to do our work, and we all chip in and participate. Trainees do not have to worry about being a part of a crazy-competitive, cutthroat program if they go into this field; instead, they will be a part of something that is very collegial—and the need is there for individuals who are trained in this area. As people retire, new individuals need to come in, and we are always looking to grow the community. This field is such a medically fascinating and unique niche, and we are here to train people and help them make connections to build a really great career.

I want to touch briefly on the importance of philanthropy. Since NETs are rare, patients, caregivers, and physicians may, at times, become frustrated by the lack of awareness, resources, and research funding compared with that for more prevalent diseases, such as breast cancer or colon cancer. With philanthropy, we can take that sentiment and put it to good use. For example, a patient group holds an annual running/walking event called Run For The Stripes at the Philadelphia Zoo, with both in-person and virtual attendance options, to help raise awareness of NETs. I think that patients feel quite empowered that there is an event that is dedicated to their disease. Run For The Stripes makes generous donations to UPenn to advance NET research. We take that money and other philanthropic donations that we receive and turn them into grant offerings for the UPenn community. We competitively select projects that we think are going to be the most important for advancing NET research.

Finally, institutional awareness is another key to success. It is important that individuals within NET programs speak up and have their voices heard at their respective institutions. Making these kinds of connections can lead to greater access to institutional resources (eg, individuals who track data and/or metrics) and, ultimately, can advance patient care.