Community Voice Survey on Evolving Needs

The Cystic Fibrosis Foundation, through the Community Voice initiative, has been expanding its interaction with people living with CF and their immediate support team. They have produced a survey to […]

CF Awareness Lasts All Year

May has been designated as CF Awareness Month. You can expect to see increased publicity relating to CF this month but, in reality, increasing awareness – and understanding – of […]

CFFC Facebook Posts – April 2019 – Part 2

04/16/2019 – Do You Have a Nonsense Mutation? – Gunnar Esiaison introduces you to a community targeted at individuals with “nonsense CF mutations” (which are defined in the article). 04/17/2019 […]

Watch the 39th Annual Kit Taylor Memorial Lecture

Dr. Andrea Kelly provided interesting insight on the evolving world of adults with CF in her presentation, “The Intersection of Cystic Fibrosis & Endocrinology,” at the 39th Annual Kit Taylor […]

Clinical Trial Alerts – April 2019

Cystic Fibrosis Foundation distributed the following clinical trial update in April. Click the trial title to get more details. April 1, 2019 Phase 3 study of lumacaftor/ivacaftor (Orkambi®) in babies […]

CFFC Facebook Posts – April 2019 – Part 1

04/01/2019 – –What I Wish People Knew About Lung Transplants – Some thoughts from a person waiting for a transplant. 04/02/2019 – Thank you Dansville Pre-K – This is the […]

Thank You Dansville Pre-K

Wednesday, March 20th, was one of those days that fills us with gratitude for the support we get from the extended CF community. That was the day for the formal […]

Three Survey Opportunities

CFF Community Voice recently distributed the following three announcements seeking participation in surveys. Please note the deadlines for participation. Complementary and alternative medicines in CF care Respond by: Wednesday, April […]

39th Annual Kit Taylor Memorial Lecture

We’re just a couple weeks away from the 39th Annual Kit Taylor Memorial Lecture. This year’s lecture will be presented on April 9, 2019 at 7:30 PM. Details are presented […]