Buddy Scalera of RXDigital Marketing interviewed Jeanne Barnett (founder of CysticFibrosis.com) on August 31, 2017.

If you are curious about the community at CysticFibrosis.com, where it came from and where it is positioning to lead the way, these are the topics of an interview Jeanne Barnett (founder of cysticfibrosis.com) had with Buddy Scalera of RXDigital Marketing. Listen to the Interview or READ More at this link…

The Interview included these topics

  • What is Cystic Fibrosis?
  • What are the members discussing?
  • Jeanne Barnett: background and evolution of the on- line patient community
  • People with CF can cross infect each other.
  • The first Genentech Drug: Pulmozyme and our community
  • The Patients become the Experts
  • CysticFibrosis.com: One of the first Patient/Caregiver On line Communities
  • Jeanne Barnett worried…
  • Cystic Fibrosis is a gateway for personalized medicine: Vertex Drug Orkambi
  • Patients have mixed feelings about taking the Orkambi drug: Happiness and Guilt
  • What is the Secret of keeping a vibrant patient community?
  • Over 2 million SEARCHABLE messages
  • We have the DOLS: the Digital Opinion Leaders
  • The Community: A Brain, a Heart, and Courage…The Wizard
  • What is the Strategy to keep the content fresh?
  • These conversations have the RAW DATA
  • The Best Way for Pharma to be involved with our Community
  • Who participates?
  • People with a chronic disease may have their own language
  • A new pilot where pharma gets access to the patients data through a private app
  • We have digital spirometers for our pilot
  • Our patients data is valuable!
  • These are exciting times for technology and our community



TauriNAC Now Available


Equal Access to Treatment for All with Cystic Fibrosis in the US?