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NEWS RELEASE

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 ON & White Plains, NY, December 08, 2014 – 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.

                                                                                                               1 http://www.carcinoid.org/sites/default/files/Global%20NET%20Patient%20Survey%20Infographic%202014.pdf

   

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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

                                                                                                               2 http://news.patientslikeme.com/press-release/patientslikeme-survey-shows-vast-majority-people-health-conditions-are-willing-share-t

   

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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

www.carcinoid.org.

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 www.selfcarecatalysts.com

Social Media Links

Twitter LinkedIn Media Contact: Ellyn Winters-Robinson Ignition Inc. (PR for Self Care Catalysts) Email ellyn@ignition.ca M 519.574.2196