BETHESDA, March 25 The Cystic Fibrosis Foundation announced today that its Facebook page has surpassed 60,000 fans--double the number of people in the United States who have cystic fibrosis, a rare and fatal genetic disease.
This rapid growth may reflect the need for people with CF to come together and exchange information in a setting that does not put their health at risk. People with CF cannot socialize in proximity to each other without risking germ transmission, which can cause serious and life-threatening lung infections.
More than 95 percent of the fans of the Facebook page have cystic fibrosis or have a family member or friend with the disease, according to a survey conducted in January.
"Cystic fibrosis is a devastating disease in many ways, and the social isolation that comes from staying apart from others who share the disease is a unique and difficult burden," said Preston W. Campbell, III, M.D., executive vice president for medical affairs of the Cystic Fibrosis Foundation. "We are thrilled that the CF community is gathering together on the Cystic Fibrosis Foundation's Facebook page and accessing much-needed support and information."
On its Facebook page, www.facebook.com/CysticFibrosisFoundation, the Foundation provides breaking news about CF drug development, treatments and care, fundraising events, and pending legislation of interest to the CF community.
"Facebook allows us to speak directly to people with CF and their friends and families," said C. Richard Mattingly, executive vice president and chief operating officer of the Cystic Fibrosis Foundation. "It is another means for reaching current volunteers and donors--and for attracting new ones--to help bring us closer to our ultimate goal of curing cystic fibrosis."
The Foundation has fueled dramatic improvements in research and care that have significantly changed the prognosis for people with CF. The predicted median age of survival for individuals with CF has increased to over 37 years -- more than double what it was 25 years ago.
About the Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. The Foundation funds more CF research than any other organization and nearly every CF drug available today was made possible because of Foundation support. Based in Bethesda, Md., the Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. For more information visit www.cff.org and become a fan on Facebook at www.facebook.com/CysticFibrosisFoundation.
SOURCE Cystic Fibrosis Foundation