Carcinoid Cancer Foundation

Carcinoid Cancer Foundation
Self Care Catalysts

Self Care Catalysts

December 08, 2014 09:00 ET

Self Care Catalysts Partners With Carcinoid Cancer Foundation to Help Carcinoid and Neuroendocrine Tumor (NET) Patients Take Control of Their Rare Diseases

Carcinoid NETs, Powered by Health Storylines™ Mobile Platform to Provide Critical Patient Support While Capturing Patient Feedback

TORONTO, ONTARIO and WHITE PLAINS, NEW YORK--(Marketwired - Dec. 8, 2014) -

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Patient intelligence health solution provider Self Care Catalysts and the Carcinoid Cancer Foundation announced today a new partnership to provide people diagnosed with carcinoid cancer and neuroendocrine tumors (NETs), including pancreatic NETs, with a new mobile patient support tool to help them take control of their rare disease journey.

According to the first global survey of patients with NETs, 41% of patients believe that a better understanding of how to manage their disease-related symptoms would help them to live a better life. Another 60% of those surveyed feel their emotional health is negatively affected by having NETs1.


Carcinoid NETs, a mobile solution created for the Carcinoid Cancer Foundation and powered by Self Care Catalysts' Health Storylines™, will empower, engage, educate and motivate NET cancer patients to take control of their rare disease. By providing patients with bite-sized information through a suite of mini-apps, Carcinoid NETs will help people with NETs track daily self-management behaviors and routines (such as diet/nutrition and medications), and engage their circle of support to improve communication and collaboration with health partners.

While helping patients manage their health and daily routines, the Carcinoid NETs app will also serve as an important information-gathering tool for the Carcinoid Cancer Foundation. Data captured through patients' use of the Carcinoid NETs app will be aggregated and de-identified to eliminate personal identification then provided to the Carcinoid Cancer Foundation. Important quantitative and qualitative insight into the real-world patient experience will help determine what kind of support programs can be developed to match patients' specific needs. In a January 2014 survey by patient network PatientsLikeMe, 92% of adults with a medical condition indicated they would be willing to share health information to help researchers learn more about their disease.2


"We have leveraged the Health Storylines™ platform to create Carcinoid NETs to provide the day-to-day assistance patients want and need, while helping researchers and healthcare professionals gain an in-depth understanding of the day-to-day struggles and behaviors of NET cancer patients," says Grace Soyao, CEO of Self Care Catalysts.

"We are very excited to partner with Self Care Catalysts to empower carcinoid and NET patients," says Keith Warner, Chief Executive Officer of the Carcinoid Cancer Foundation. "By providing the Carcinoid NETs app to the NET community, we will share an extremely valuable resource. It's critical for individuals who are living with a rare disease to have a wide variety of resources. These include identifying physicians who specialize in treating carcinoid/NETs, creating support circles, learning about treatment options, and accessing clinical trials. Additionally, by gathering information from patients and their loved ones, we can further identify and help to meet the needs of the community."

"When someone is first diagnosed, the first thing they turn to is technology-either the Internet or apps-where they can get some help," says Judy Golz, a carcinoid patient and NET support group leader. "A diagnosis can be very overwhelming, and when you live with the disease, it's hard to keep track and organize all of the related information such as labs and diagnostics. The Carcinoid NETs app will be an invaluable tool to help patients organize their thoughts, and take important information, such as their latest medications, their signs and symptoms, and bloodwork results with them on their smartphone to improve communication with healthcare providers."

The Carcinoid NETs app will be made available to patients free of charge early in 2015 accessible online through a desktop computer and as a mobile app which can be downloaded from the Google Play and Apple App Store. It will also be promoted through the Carcinoid Cancer Foundation's website, blog, and social media channels including Facebook and Twitter.

About the Carcinoid Cancer Foundation

The Carcinoid Cancer Foundation is the oldest nonprofit carcinoid and related neuroendocrine tumor organization in the United States, founded in 1968. The mission of the foundation is to raise awareness and educate the general public, patients, and the healthcare community about these rare diseases; to support NET cancer patients and their loved ones; and to serve as patient advocates. For more information visit

About Self Care Catalysts

Self Care Catalysts is a health solutions company powered by patient intelligence and analytics. We find the consumer within the patient. Our mission is to build innovative, patient-centered, and technology-driven self-care solutions for patients and meaningful analytics and insights for healthcare organizations and pharmaceutical companies. For more information visit us on the web at

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Contact Information

  • Media Contact:
    Ellyn Winters-Robinson
    Ignition Inc. (PR for Self Care Catalysts)
    M 519.574.2196