Welcome to hopkinscf.org, the web portal for the Johns Hopkins Cystic Fibrosis Center.
Drs. Sheldon and Arlene Bearman and The Herbert Bearman Foundation have supported creation of a sophisticated, online resource that covers all aspects of cystic fibrosis (CF), from pioneering research findings about the structure and function of the CFTR protein to novel therapies to clear airways and control infections to new ways to manage CF at home. We’ll not only tell you what we know about CF, we’ll show you through illustrations, animations and videos. A picture tells what a thousand words cannot, especially when it comes to CF tests like mutation analysis and nasal potential difference.
Cystic fibrosis can be a socially isolating disease. Because of the risks of patient-to-patient transmission of respiratory infection, CF patients must keep their distance from each other. Yet the complexity of the disease and the immense challenges it imposes on patients and their families call for connections among those patients, their families and caregivers. There is no cure for CF, only new and better ways to manage it. There is no one CF experience, but thousands of experiences influenced by factors like the severity of the disease, the age and gender of the patient, family circumstances, and access to care. There is a great desire for the exchange of these experiences, the sharing of successes, as well as news about drug advances and the latest therapies. There is great value, as well. Connect with us via our social media sites to tell your story.
The research section of our site will keep you up to date on the latest studies and bench-to-bedside therapies at Hopkins. Want to enroll in a study? We’ll tell you how. You can subscribe to Partners in Discovery, our CF research newsletter. On our People pages we’ll tell you about our CF faculty and staff, from physicians and nurses to nutritionists and therapists, who work with you each day to fight CF and improve your quality of life. Indeed, this is a comprehensive, “Everything you wanted to know about CF” website that addresses three distinct audiences—adults, teens and kids. These sites are designed to address the concerns and needs individuals with CF and their families, friends and caregivers as they change over a lifetime.
Please connect with us with questions or tell us how we can improve this website by emailing firstname.lastname@example.org.