The Breathing Room Book is Now Available!

We are VERY excited to announce the arrival of the Breathing Room book.
The book is a collection of the images and writings from “Through the Looking Glass: Images of Adults with Cystic Fibrosis” and “Caregiver Stories”, as well as biographies of the participants and photographers.  You will also find messages from our executive director, Michelle Compton Continue reading The Breathing Room Book is Now Available!

Video Short #5 – CF: Accepting and Living Your Life with CF

Now online How do you talk to people about CF? Go to http://bit.ly/OJSXD5 to watch CF patients, caregivers and experts share their personal stories on accepting CF and how they describe CF to others. Being open about CF may help strengthen your support systems and help you deal with CF’s day-to-day issues. The video features:
·         LaCrecia Britton, CF Coordinator, RN and CPNP
·         America’s Got Talent finalists, Ali and Christina Christensen, and their parents
·         Ronnie Sharpe, CF patient, author of RunSickBoyRun.com and co-founder of CysticLife.org

FDA Safety and Innovation Act Signed: A Monumental Step Toward The Development of Safe and Effective Treatments for Millions of Americans With Rare Diseases

Approval Culminates Years of Advocacy, Education and Relationship-Building Led by NORD

July 9, 2012, Washington DC—-The FDA Safety and Innovation Act, signed by President Obama today, contains the most groundbreaking measures for rare disease patients and their families since the Orphan Drug Act of 1983, the National Organization for Rare Disorders (NORD) said. Continue reading FDA Safety and Innovation Act Signed: A Monumental Step Toward The Development of Safe and Effective Treatments for Millions of Americans With Rare Diseases

CFTR2 – a fabulous new resource on gene mutations is now available for public use!

Collaborators from several institutions around the world and the US Cystic Fibrosis Foundation are excited to announce that a new resource – CFTR2 – is now available for public use!  This is the result of an international research collaboration to provide information about specific Continue reading CFTR2 – a fabulous new resource on gene mutations is now available for public use!