Finding Inspiration in Being Rare

A Journey in Advocacy

Greta obtains NET awareness day proclamation at Connecticut state house.

Greta Stifel isn’t just “rare,” she’s triple “rare.” After being diagnosed with Carcinoid Cancer, she simultaneously developed Carcinoid Syndrome, and recently Mast Cell Activation Syndrome (MCAS).  Greta has faced multiple life-threatening complications from her conditions, such as acute angioedema attacks, anaphylaxis shocks, and extreme hypertension. Instead of letting these experiences bring her down, she channels them into action. 

Annually, the last day of February is Rare Disease Day. It is a day to raise awareness about the impact of rare disease.  Greta is active on this day and many others since her NET cancer diagnosis.

“I could have settled onto the couch, but I wanted to make a big difference,” says Greta. She got the news in September 2015 and was on the steps of city hall by November the following year where she sought a proclamation for NET Cancer Awareness Day for her town—and then her state—Connecticut. As the first rare NET cancer patient in her state pursuing policy change, she did not stop there.

Greta also wants to increase awareness about NETs among health care professionals. Like many NET patients, Greta’s diagnosis was missed, misdiagnosed, and treatment delayed, while the cancer spread.  Currently, she is advocating for state-level policies to increase physician education on rare cancers and to increase screening in at-risk populations. Sharing her story publicly is one way she hopes to bring NETs into the spotlight. She uses her very unique medical experiences to affect positive change within the medical community, general public, and government. She hopes to motivate people to take better care of themselves and to be their own advocates.

Greta does not want her illness to define her. So that no one else endures what she has, Greta’s working to increase awareness and education with urgency; her cancer is stage four and has metastasized throughout many organs. She wants to be a catalyst for change and encourages others to find their voices.

As a financial advisor for 30 years, Greta is grateful for nonprofits like NETRF that join the cause. “People should aspire to give to NETRF where your money can support research for a cure.” It is all part of her philosophy to “do more, love more, be more, give more, and leave a legacy.”   

Despite some swelling and stiffness from MCAS, Greta plans to be at Connecticut’s state capital for Rare Disease Day 2018 and the National Institutes of Health (NIH) on March 1st.  As in the past, she will push back the pain in search of greater gain—awareness, education, and equity for rare diseases.


Author: Neuroendocrine Tumor Research Foundation

The mission of the Neuroendocrine Tumor Research Foundation is to fund research to discover cures and more effective treatments for carcinoid, pancreatic, and related neuroendocrine cancers. Neuroendocrine tumors (NETs) are rare and originate from specialized cells called neuroendocrine cells. These cells, which have features like nerve cells and hormone-producing cells, release hormones into the blood in response to signals from the nervous system. Neuroendocrine tumors can occur throughout the body, but primary sites include the gastrointestinal tract, pancreas, rectum, lungs, and appendix. The majority of neuroendocrine tumors can be divided into two classes: carcinoid and pancreatic neuroendocrine tumors. Pheochromocytoma is a rare form of neuroendocrine tumor.

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