What role do genetics play in neuroendocrine tumors (NETs)? Is genetic screening right for you? Should you have your family members screened for a hereditary gene? In this episode of NETWise, we will explore the relationship between NETs and DNA and explain why your genetic code might hold important implications for treatment strategies, prognosis, and the health of family members.

You’ll hear from Gretchen Thone, a genetic counselor at Geisinger Medical Center about how hereditary conditions can be passed from parents to children and the importance of seeking professional testing and counseling. Dr. Joseph Dillon from the University of Iowa, Dr. Lauren Fishbein from the University of Colorado and Dr. Mark Lewis from Intermountain Healthcare in Utah will share their expertise about the genes that are linked to syndromes that have an increased risk of developing  NETs.

You will also have an opportunity to hear from John Metzcar, a patient with Multiple Endocrine Neoplasia, Type I or “MEN-1” and Doug Karle, a patient with Von Hippel Lindau Syndrome. They will share their personal stories of living with a hereditary syndrome, the role genetic testing played  in their journey and how being a father shaped their experiences and decisions with genetic testing.

While most NETs are not caused by genetic mutations, here are some syndromes that are related to neuroendocrine tumors.

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Causes of NETs  

Genetic Testing for NETs

Pheochromocytoma and Paraganglioma

Von Hippel Lindau Alliance

PheoPara Alliance

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

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