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NET Disease

Neuroendocrine tumors (NETS) are rare and complex. In the United States alone, over 180,000 people are living with NET cancers, nearly seven in 100,000 are diagnosed annually, and statistics show that the number of people diagnosed is on the rise.

NETs are tumors that originate in neuroendocrine cells or cells that produce hormones in response to signals from the nervous system. These cells are responsible for performing functions in the body such as regulating blood sugar, release of adrenaline, and how quickly food is processed through the gastrointestinal tract.

NETs are often misdiagnosed. When a correct diagnosis is provided, it frequently occurs in the later stages of the illness, with a large number of patients presenting with spread of their tumors to distant sites.

NETs can be found anywhere in the body where there are neuroendocrine cells. Some of the more common primary locations are the pancreas (pancreatic NETs or PNETs), the lungs (pulmonary NETs) and the gastrointestinal tract including the stomach, small intestine, small bowel and rectum. NETs can arise spontaneously or can be associated with inherited disorders. Multiple Endocrine Neoplasias types 1 and 2 (MEN1 and MEN2), hereditary paraganglioma - pheochromocytoma syndromes, and von Hippel-Lindau disease (VHL) are all examples of conditions that predispose people born with certain gene mutations to developing neuroendocrine tumors.

Our Focus

The North American Neuroendocrine Tumor Society’s (NANETS) mission is to support outcomes for patients with neuroendocrine tumors through multidisciplinary medical education, NET related research, publication of guidelines and the exchange of knowledge and innovation.

NANETS distinguishes itself from other societies through its dedication to medical education and research through its network of multidisciplinary NET medical professionals. Its regional conferences and annual symposia are designed by medical professionals for medical professionals in a wide range of medical disciplines (Medical Oncology, Surgery, Endocrinology, Gastroenterology, Pathology, Cardiology, Radiology, Nuclear Medicine, and Interventional Radiology, to name a few, as well as basic science researchers). Meetings also include general practitioners, advanced practice providers and nurses. NANETS’ 400+ members represent many of the most widely recognized and respected physicians, surgeons, allied healthcare providers and researchers in the world, all working toward the same goal: to improve treatment outcomes and care for patients living with neuroendocrine tumors.

NANETS fulfills its mission of expanding awareness, providing education and funding research in three core ways:

NET Medical Education

NANETS offers up to six regional conferences each year, hosted in conjunction with the leading hospitals, universities, and research facilities in North America. These comprehensive one-day courses provide multidisciplinary training to medical professionals and allied health care providers. Participants come away from the conference with an understanding of standard management of patients with neuroendocrine tumors, as well as new diagnostic and therapeutic techniques. Funding and support for the regional conferences are currently provided through educational grants and exhibitor/supporters.

NET Research Awards and Scholarships

NANETS is committed to connecting pioneers in the NET field to young scientific minds who will emerge as the next generation of NET experts. Through research, NANETS engages medical professionals in the early stages of their careers to foster further exploration and advancement of NET diagnosis and treatment.

Since 2009, NANETS has provided funding for 28 research grants, totaling $2.1 million in support for young researchers.

Research grant recipients present results of their studies at NANETS’ Annual Symposium and on-line, and their findings are shared with the NET medical community and beyond through scholarly publications.

Consensus Guidelines

NANETS members are actively involved in the development of consensus guidelines to support the medical treatment and management of NET disease. Guidelines are developed pursuant to National Institute of Health (NIH) standards and serve as important references for practicing physicians. Over the last several years, NANETS has developed guidelines for surgical management of small bowel neuroendocrine tumors; surveillance and medical management of midgut neuroendocrine tumors; appropriate use criteria for somatostatin Receptor PET imaging in neuroendocrine tumors; management and treatment of neuroendocrine tumors; and Peptide Receptor Radionuclide Therapy (PRRT), surgical management of pancreatic NETs; and medical management of pancreatic NETs.

Why Give?

Funding is essential to continue support of basic and translational research to advance the medical field, expand the knowledge base and facilitate the understanding of neuroendocrine tumors. Research grants funded through NANETS in the past have produced ground-breaking studies that further the knowledge, diagnosis and management of NET disease.

With over 22,000 new diagnoses each year, it is vital to grow educational and research support that is critical to the expansion of the knowledge, awareness and treatment guidelines for NET tumors. Over 500 medical professionals gather for intensive continuing medical education specific to NETS. In addition, accredited medical conferences are held all over the country hosted by leading medical institutions, physicians and researchers.

Who Benefits?

Through the NANETS Education and Research Fund, NANETS is better equipped to advance its mission of supporting outcomes for patients with neuroendocrine tumors through multidisciplinary medical education, NET-related medical research, publication of guidelines and the exchange of knowledge and innovation.

NANETS Education and Research Fund is a vital resource for young investigators doing cutting-edge research, and for medical professionals working to increase awareness and advance the understanding and treatment of NET disease. NANETS’ educational efforts and research funding support create both short and long-term benefits across the spectrum of NET medical education, research, diagnostics and treatment for patients living with NET disease.

Because of its rarity, many medical professionals may only see neuroendocrine tumors a few times in the course of their careers. Diagnosis can be slow because symptoms may be mistaken for other conditions, and those tumors tend to grow slowly. By offering regional education conferences throughout North America, NANETS advances awareness of the disease and its many complex facets to medical professionals from a range of medical professions.

Patients seeking correct diagnoses and treatment to manage NET disease benefit from the education their medical oncologists and other healthcare providers receive through NET regional conferences, arming them with the most current and cutting-edge methods of diagnosis, treatment, surgical protocols and management of NET diseases.

For young medical professionals considering entering the field, access to grant funding from pharma and foundations is not as easily or readily available as it is to other, more widely-recognized and diagnosed diseases.

During the 13 years of its existence, NANETS has remained committed to advancing the study and treatment of NET tumor disease by continuing to seek out funding resources for young investigators, medical professionals and caregivers.

Ways to Give

1. Make a donation when you renew your membership.

2. Consider NANETS when making annual decisions about charitable giving.

3. Encourage colleagues to join NANETS and make a charitable contribution to support our mission.

4. Make NANETS donations a part of your major giving and estate planning strategy.