When the Johns Hopkins Cystic Fibrosis Center’s redesigned website launched in June 2019, Laura Homassel could not wait to explore it with her son, Justin, 20, who was diagnosed in utero and began his care at Johns Hopkins Children’s Center immediately after birth. Why the rush to see a website? She had learned this fourth iteration of the site included an enhanced social media presence, an added-value feature for patients often cut off from others due to the risk of infection.

“With this disease, it’s easy to feel isolated and the new Twitter, Instagram, Facebook and YouTube links make the site very current,” says Homassel, of Ellicott City, Maryland. “The YouTube videos of speakers at some of our past events are especially helpful to share with my son, who couldn’t attend for infection control reasons.”

Mobile-friendly, with unified design and updated technology, the website is a comprehensive resource featuring new research related to extending life in patients with cystic fibrosis (CF), a disease with no cure. “Getting the latest news on cystic fibrosis research, especially any clinical trials at Johns Hopkins that might benefit Justin, is one of the best features on the site,” says Homassel.

The center’s director, Peter Mogayzel, agrees, but adds that the site presents a platform for people to understand all elements of cystic fibrosis – from the disease manifestations to the therapies. “Also, it provides a way to interact with the CF Center and understand our practice.”

The website provides a venue for patients and families to interact, which Mogayzel says will have greater importance as more adults are living with CF and doing better.

Johns Hopkins physicians worked with the developer to create original illustrations and animations about cystic fibrosis, the issues, the basic science and its manifestations. They also developed animated learning games for kids, covering organs affected by CF, medication orders and how certain drugs can repair the cystic fibrosis transmembrane conductance (CFTR) protein. In patients with cystic fibrosis, the CFTR protein does not function properly, causing mucus in various organs to become thick and sticky.

“The games are meant for school-age children to help them better understand cystic fibrosis,” says Mogayzel. “Parents are using the site to educate kids and teachers.”

“With links to informative articles and seasonal tips, it’s a great resource for any questions I might have between clinic appointments,” adds Homassel. “If there are any changes to Justin’s health or his treatment regimen, I can look there first for more information. Cystic fibrosis is a progressive disease and you never know when there’s a new complication, or medication.”