Our Collaborators

Our community of collaborators share our vision of an improved quality of life for people with cystic fibrosis. They bring together a wealth of health, technological and entrepreneurial knowledge that aims to change how cystic fibrosis is managed.

cysticfibrosis.com

Support, education and hope in the Cystic Fibrosis community since 1996
CysticFibrosis.com is one of the world’s largest social media networks dedicated exclusively to the cystic fibrosis community. In addition to the forums, the site contains information on clinical trials, gene therapy, testing, associations, research and events.

  • Largest online CF community – 18,000 community members
  • Members in 122 countries
  • Over 2 million member post
  • Over 13,000 newsletter subscribers

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Portable Genomics

CFTechnology and Portable Genomics are teaming up to bring a private and CF-tailored health data management system to your mobile phone.
Over twenty years ago, Jeanne Barnett, founder of CysticFibrosis.com and CFTechnology.org, created a website and message boards for caregivers and people with CF. Her driving belief was that patients and caregivers have an abundance of experience, knowledge, and hope to share with one another.

This mission has brought her to work with Patrick Merel, a molecular biologist and the founder of Portable Genomics. Patrick believes that people are the creators of crucial health data—genetic, biometric, medical, behavioral and lifestyle—and that this data should be controlled by patients and caregivers themselves.  Read more