About NETTRO

Built by a patient. Built for a community.

Our Mission

Bridging the gap between bench and bedside for understudied neuroendocrine tumors through patient partnership and translational research collaboration.

Our Purpose

The Neuroendocrine Tumor Translational Research Organization (NETTRO) exists to advance translational research for neuroendocrine tumors, beginning with pituitary tumors as a critical point of entry. While often benign, pituitary tumors are biologically complex and can offer insight into more aggressive NETs, including those of the pancreas, lung, and gastrointestinal tract. By bridging the patient experience with scientific discovery, NETTRO seeks to improve treatment outcomes, accelerate innovation, and foster a collaborative approach across the neuroendocrine tumor community.

Our Story

I was diagnosed with Cushing's Disease in 2020, but I had lived with the symptoms for years - anxiety, weight gain, chronic fatigue, insomnia, bone fractures and high blood pressure just to name a few and even had to quit my career. After surgery to remove the pituitary neuroendocrine tumor (PitNET), I suffered an adrenal crisis that went untreated and a recovery I wasn’t prepared for. It was frustrating to realize that such a difficult journey was more typical than rare. Despite treatment, I remain on more prescription medications and autoimmune disorders than before I was diagnosed.

My personal, lived experience was enough for me to take action so that others diagnosed after me would not have to bear the same burdens. I volunteered for the Cushing’s Support and Research Foundation and eventually identified an underserved space for pituitary tumor diseases and founded the Neuroendocrine Tumor Translational Research Organization (NETTRO). By sharing information, breaking down silos between bench-and-bedside, we can provide truly translational research to bring a better quality of life for patients. 

I ask you to join me in building our community for a chance to change the trajectory of PitNET diseases for every patient who comes after me.
- Gretchen Jordan, Founder and President, NETTRO

Our Core Values

Patient Partnership

The people living with pituitary neuroendocrine tumors (PitNETs) are not study participants. They are collaborators. Their experiences, priorities, and quality of life must inform the questions researchers ask, the endpoints they measure, and the outcomes they pursue. We bring patient voice into the scientific process early and keep it there throughout.

Collaboration Over Competition

NETTRO exists to strengthen the PitNET community, not to compete within it. We connect patients, researchers, clinicians, and industry partners around shared goals, and we measure our success in part by how well we help others succeed.

Patient-Centered Research

Good science is not enough if the people it is meant to help were never part of shaping it. We advocate for a standard of translational research that is built around patient experience and quality of life from the very beginning, not added on at the end.

Equity of Access

Understudied does not mean unimportant. We work toward a future where patients with rare PitNETs have the same access to research, information, and advocacy as those with more common diseases.

Board of Directors

Gretchen Jordan

Founder & President

Erica Webb

Vice-President

Regina Duval

Secretary

Bridget Houser

Treasurer

Christine Yedinak M.N., F.N.P., D.N.P

At-Large Member

Ready to Connect

Whether your work involves science, care, lived experience of pituitary neuroendocrine tumors, or simply have a passion to support those that do, we want to hear from you.

Contact Us