Carcinoid Cancer Foundation and SCC

Testimonial from Grace Goldstein, Chief Operating Officer, Carcinoid Cancer Foundation

September 2019

 When the Carcinoid Cancer Foundation first began working with Self Care Catalysts nearly six years ago, we saw the opportunity to partner with forward-thinking professionals to create a tool for neuroendocrine tumor (NET) patients, their loved ones, and physicians that would help them manage their disease on a daily basis. Unlike other cancers that have a dismal prognosis, people can live with NETs like a chronic disease for decades.

Together, CCF and SCC created a unique app for the NET community.  Building on a platform SCC was using across different disease areas, we customized the app to specifically address the needs of NET patients. Initially and subsequently, the response to the app has been uniformly positive and the app has been embraced by the community. 

Benefits of the app include improved NET patient communications with their physicians, the ability to keep a variety of records in one place, receiving medication reminders, and getting up-to-date information from the NET community. The app also has some unique features such as soothing music composed by NET patients, a meditation component (essential for people living with the stresses of cancer), a section dedicated to nutrition by NET nutritionists around the world, and NET patient stories called Zebra Tales. 

Additionally, the app is used to survey the NET community to learn more about living with this rare disease -- everything from treatment options to quality of life issues to daily challenges faced when living with NETs. Learning more from the community can result in positive changes going forward that could improve quality of life and length of life.

Whenever we talk to others considering partnering with SCC, we tell them of the wonderful partnership we have developed and continue to grow over the years.  Speaking about SCC’s receptivity to enhancing our app we always say, “We are only limited by our imagination and each and every time we suggest a new section or a new way to publicize and use the app, the answer has always been YES.”

Ram Soyao