Who is Cystic Fibrosis Worldwide?
Cystic Fibrosis Worldwide (CFW) is a non-profit organization which has its registered office in Massachusetts, USA . CFW is dedicated to improving quality of life and life expectancy for people living with cystic fibrosis (CF), a genetic life-threatening disease. Since inception in 2002, CFW has used a variety of programs to aid the CF communities throughout the world.
With 67 member countries, CFW’s primary function is to spread information about the disease among scientists, medical professionals, caregivers, patients, and families and to act as a platform for the international exchange of information. In addition, CFW helps member countries, both developed and developing, by providing capacity-building tools in areas of governing, operating, and fundraising. For instance, CFW supports member countries by helping them develop CF Centers and lobbying for government support.
What is Cystic Fibrosis?
CF is a genetic disease and the most common life-threatening disease in the Caucasian population. CF clogs the internal organs (especially the lungs and digestive tract) with thick sticky mucus, which makes it very difficult to breathe and digest food. If CF is diagnosed at birth and preventive treatment begun early, patients can live longer and have a higher quality of life. There is ongoing research and development globally with a focus on finding a cure.
There is no cure for Cystic Fibrosis. Children born with this disease will spend their lives undergoing rigorous daily treatment required to keep them healthy and alive. This includes hours of physiotherapy and taking inhaled and intravenous drugs as well as enzyme pills to digest food.
It is estimated that there are between 70,000 and 100,000 people with CF worldwide, but it is difficult to state an accurate figure as people with CF in countries without developed healthcare die before diagnosis. A majority of countries with CF patients have no registries or collected data from health facilities and thousands of CF patients are treated for symptoms without ever being diagnosed.
In the US and UK, average life expectancy is 35 to 40 years old. In countries such as El Salvador, India and Bulgaria, life expectancy drops to below 15. Please visit our member countries’ sites to learn more about CF and the situation for people with CF worldwide.