Organizations with a national perspective have been established in many countries. These organizations maintain websites with comprehensive information with regular updates. We have provided links to English language sites with summaries of key components of those sites. (The CF Canada site offers its content in English and French.)
The Cystic Fibrosis Foundation (CFF) is a premier source of CF information. Their website has comprehensive information on every aspect of cystic fibrosis. Some of the significant sections are identified below with descriptions taken from those pages.
Managing CF presents articles on every aspect of life with CF broken down into these caregories: health and wellness, family planning and parenting, traveling with CF, treatments and therapies, advanced disease, insurance, finances, and legal.https://www.cff.org/managing-cf
As noted on the site: “CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.”
The CF Community Blog offers personal views of life with CF. From the site: “The CF Community Blog is written by the community, for the community. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.”
CFF produced a single sheet, two-sided flyer that provides a quick summary of the classes of CF mutations and the physiology of each class. The description of potential treatments reflect the status in 2017. Click this link to download a PDF version of the flyer.
Cystic Fibrosis Canada is comparable to CFF for the CF community north of the US border. From their web site: “Cystic Fibrosis Canada is a leading organization with a central role engaging people living with cystic fibrosis, parents and caregivers, volunteers, researchers and healthcare professionals, government and donors. We work together to change lives through treatments, research, information and support.”
Patient And Caregiver Resources offers a large number of downloadable guides organized in the following groupings: CF health, education, employment and finances, global affairs, transition (pediatric to adult care), parenting with CF, and additional resources. Some of the information is specific to Canada, but the topics are generally relevant.
The blog section provides updates from the organization as well as personal stories. You can get a sense of the differences in life with CF introduced by the differences in governmental approach.
Cystic Fibrosis Trust is the CFF equivalent for the United Kingdom. They describe themselves as:“the charity uniting people to stop cystic fibrosis (CF). We fund vital research, improve care, speak out and race towards effective treatments for all. We won’t stop until everyone with cystic fibrosis can live without limits.” Cystic Fibrosis Trust as a wealth of in formation; two of the more unique features are highlighted below.
Interactive body graphics (one female, one male) give you a quick look at how CF affects selected body part by clicking on the related image in the graphic. The graphic is supplemented with more detailed descriptions (and downloadable fact sheets) organized through the Cystic fibrosis complications and symptoms page.
Cystic fibrosis in fiction offers help in dealing with representations of CF in literature and movies. In particular, there are discussions relating to “Five Feet Apart” and “Casualty.”
Cystic Fibrosis Ireland, like the other national organization has a variety information resources and a blog section.
Cystic Fibrosis Australia offers additional articles to further your research on the aspects of CF. This site has a brief, automated security check before the home page loads.
