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This is the oldest of the other organizations I know about working on neuroendocrine cancer, neuroendocrine tumors, and carcinoid syndrome. In addition to information on this form of cancer, they also provide links to support groups for patients and caregivers and sponsor some conferences aimed at a lay audience. The founder here is a doctor who is one of the leading experts on the disease. They have been very good about helping me think through what the purpose of Walking with Jane needs to be.

The founder of this organization is a lawyer who discovered she had NEC only after she collapsed in the subway. Because they are located in Boston I have spent more time with them than the other two foundations. Their site has good information about the disease and blogs from both their founder and their director. Thanks to the generosity of their founder and their board of directors, all the money they raise goes directly into research. They participate in a wide range of walks and runs across the country. They have raised about $6 million since their founding. They send out a regular newsletter by email. This group has also been very good about  providing advice and encouragement as I have worked to set up Walking with Jane.

I particularly like their motto, “If you don’t suspect it, you can’t detect it.” They were founded in 2003. According to their website they came up with the zebra bracelets and stuffed animals as a symbol of the disease based on a version of a quote I first heard from Jane’s cardiac surgeon the night before she died: “We spend years teaching young doctors that when you hear hoofbeats you shouldn’t look for zebras. A zebra killed your wife.” They also offer help in finding support groups.

This group is sponsored by Novartis. They have a wide range of videos and information on NEC and CS. They also offer links to support groups, videos of people who are living with the disease, and NEC fundamentals.

North American Neuroendocrine Tumor Society

NANETS sponsors and organizes continuing medical education programs for medical personnel dealing with neuroendocrine tumors and carcinoid syndrome. They are sponsoring a major conference in Minneapolis later this fall that will include researchers and doctors from 17 different countries. A paper on some new research that has not yet been published will be presented there. This is an A List conference that reads like a who’s who in the NET universe.

One Inning at a Time Foundation

Hap Rowan has been fighting NET cancer since 2008. He and his wife launched a foundation in New Jersey in 2012 to seek funding and raise awareness about NET cancer. This links to the group’s Facebook page.

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