CysticFibrosis.com Information

Who are we: We are patients and families from all over the world, sharing our experiences with CF and gaining power over our disease and our futures. We are joined together to grow our knowledge and reach amazing goals. Our History: CysticFibrosis.com is a social health community, founded in 1996 at the dawn of the Internet and the rise of the e-patient — the electronic or empowered patient. We are a source of information, hope, and encouragement for patients and families affected by CF. We educate each other in comprehensive and innovative ways: forums, chats, videos, newsletters, polls and blogs. The KnowCF section of our site offered timely and crucial information on the H1N1 virus and CF last fall, followed by a unique video series on parenting children with health issues. More fantastic programs are in the pipeline for this spring and summer. Right Now: CF patients, their families and caregivers use CysticFibrosis.com to connect with others sharing similar experiences: to seek hope, to guide each other through new experiences, and to comfort each other in times of grief. Our members learn about clinical trials and new research. They compare treatment regimens, and increase compliance and proper use of medical equipment. They gain perspective and receive encouragement on how to optimize their long-term pulmonary and digestive function. The Future: The knowledge shared and gained on CysticFibrosis.com percolates through our members, through CF centers and through research groups across the world. We believe that our community and our movement not only fuel the search for a cure for CF—we are transforming that search and revolutionizing the traditional flow of information.