Cystic fibrosis (CF) is an incurable genetic disease of the lungs and pancreas, creating a cascade of symptoms that severely impacts a person’s health and can lead to life-threatening infections and premature death.
30,000 people in the US have CF. About 15,000 are between the ages of 11 and 21. Treatment requires hours of respiratory therapy and ingesting dozens of pills every day. Its a challenge to keep up with and only about 50% of teens and young adults with CF fully comply with their medical regimens which, in turn, negatively impacts their health and well-being. CFfone is designed to increase adherence and improve health status through a positive and supportive experience.
CFfone is a mobile website, accessible by cell phone or computer, for teens who have CF. The site provides:
– A social network for staying in touch with a community of CF friends.
– Instant messaging for one-to-one communications.
– A speech capable “avatar” who answers CF-related health questions.
– A text messaging system for sending treatment reminders.
– CF specific tips and information from leading experts.
– The latest news stories about CF discoveries, activities and people.
Funding for CFfone was awarded through a National Institutes of Health (NIH) Small Business Innovative Research (SBIR) grant after rigorous evaluation. We have a highly respected team of CF clinical experts and a research team at the University of Miami is conducting a randomized controlled trial to test the effects of CFfone at seven CF Care Centers.
CFfone has been presented and demonstrated at recent North American CF Conferences by leading experts in the CF care community. And CFfone is listed in the Cystic Fibrosis Foundation Educational Resource Guide.
Most importantly, CFfone is getting very positive feedback from current users. One member recently posted this message:
“For years – and I mean YEARS – I’ve been feeling so alone with this disease because I never had anyone to talk to. But now that I’m on this site, I can talk to people of all ages. It’s amazing! And think of our testimony and life story we can share too. I believe that we can touch people’s lives in a way no one else can”
Another put it more succinctly:
“It is pretty cool! I adore this site! “
| Click the video below to see what CFfone look like. |
For more information about CFfone, contact info@cffone.com
To join CFfone, go to www.cffone.com.