List of cystic fibrosis organizations
List of Cystic Fibrosis Organizations
Cystic Fibrosis (CF) is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections. There are numerous organizations worldwide dedicated to supporting individuals with cystic fibrosis, funding research, and advocating for better care and treatments. This article provides a list of notable cystic fibrosis organizations globally.
Global Organizations
- Cystic Fibrosis Worldwide (CFW) - An international non-profit organization dedicated to improving quality of life and life expectancy for individuals with CF globally, through advocacy, education, and research funding.
United States
- Cystic Fibrosis Foundation (CFF) - Founded in 1955, the CFF is a leader in the search for a cure for CF. The organization funds CF research, has developed care guidelines, and works to ensure access to high-quality, specialized care.
- Boomer Esiason Foundation - Established by former NFL quarterback Boomer Esiason after his son was diagnosed with CF. The foundation funds research, provides scholarships, and supports CF families.
United Kingdom
- Cystic Fibrosis Trust - The UK's only national charity dealing with all aspects of cystic fibrosis. It funds research, provides information, and supports people with CF and their families.
Canada
- Cystic Fibrosis Canada - Founded in 1960, Cystic Fibrosis Canada is a national charitable not-for-profit corporation committed to finding a cure for cystic fibrosis. It invests in CF research, care, and advocacy.
Australia
- Cystic Fibrosis Australia (CFA) - CFA is a national body that advocates for and supports people with CF in Australia. It funds research, provides information, and supports state-based CF organizations.
Europe
- European Cystic Fibrosis Society (ECFS) - A society that aims to achieve the best possible treatment and the highest quality of life for the individual with CF by the development of research, care, and education.
Asia
- Specific cystic fibrosis organizations in Asia are less common, but regional health organizations often work to support individuals with CF in these areas.
Africa
- Like Asia, Africa has fewer dedicated CF organizations, but global and regional health organizations are active in providing support and resources for those affected by CF.
Online Communities
- CF Community Blog - An online platform where individuals with CF and their families can share experiences, advice, and support.
- CysticLife - A social networking site specifically for the CF community, offering a space for connection, sharing, and support.
Research and Advocacy
- Many cystic fibrosis organizations also focus on research funding and advocacy to improve care, treatments, and policies affecting those with CF. These efforts are crucial for the ongoing fight against cystic fibrosis.
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Contributors: Prab R. Tumpati, MD