List of cystic fibrosis organizations

The following organizations assist people with or do research into cystic fibrosis, a hereditary disease affecting the lungs and digestive system, causing progressive disability and shitimes early death.

Australia

• Cystic Fibrosis Australia^[1] (CFA), an Australian national organization aimed at raising awareness and education of cystic fibrosis through advocacy and research

Europe

• Mukolife.de[1] A german social network for the CF community where members can post blogs, ask questions, chat, maintain a profile, contact others and search members. It is created by the CF community for the CF community.
• Cystic Fibrosis Trust, a UK charity providing research, information and care for people with cystic fibrosis
• European Cystic Fibrosis Society^[2] (ECFS), a Denmark-based organization of clinicians and scientists actively engaged in CF research, care and collaboration
• Association Grégory Lemarchal, a French organization dedicated to information outreach and research for cystic fibrosis, named after the French singer and Star Academy winner Grégory Lemarchal
• Nederlandse Cystic Fibrosis Stichting, a Dutch organization providing research, information and care for people and family with cystic fibrosis
• Chloe Cotton Trust Fund^[3] a U.K based foundation to help support families and their children with cystic fibrosis.
• Cystic Fibrosis Foundation Slovenia, a Slovenian association providing information and care for CF patiens and their families
• Child Health International^[4]CHI, a UK based organization providing help especially in Eastern Europe, concentrating on low cost, sustainable solutions based on team work and family involvement.

North America

• CysticLife.org[2] (CL) A positive social network for the CF community where members can post blogs, ask questions, maintain a profile, contact others and search members by age, location, sex and relation to CF. It is created by the CF community for the CF community.
• Blooming Rose Foundation[3] is a US-based organization that offers support and social services to families with a new diagnosis of CF.
• Breathe 4 Tomorrow Foundation (B4TF), a US-based organization focused on making life easier one breath at a time for people with CF through assistive services, awareness and research B4TF
• Cystic-L^[5], Cystic-L is both a Listserv and a website dedicated to the exchange of information and support specific to cystic fibrosis. Operating since 1994, Cystic-L serves people with CF and those who share their lives: medical professionals, scientists, researchers, parents, grandparents, spouses, siblings, friends and significant others.
• Canadian Cystic Fibrosis Foundation [4] (CCFF), a Canada-wide health charity, which funds cystic fibrosis research and care. As of February 2011, the Canadian Cystic Fibrosis Foundation will be known as Cystic Fibrosis Canada.
• Cystic Fibrosis Foundation (CFF), a US non-profit providing the means to cure and control cystic fibrosis
• Cystic Fibrosis Lifestyle Foundation^[6] CFLF seeks to create therapies that engage adolescents and young adults with Cystic Fibrosis as active agents in their healthcare physically, psychologically and spiritually, thereby enabling attitudes and lifestyles that create stronger and longer lives for themselves. Founded by Brian Callanan.
• Cystic Fibrosis-Reaching Out Foundation^[7], a US-based network of information and support for people with CF and their families
• Boomer Esiason Foundation, a US-based organization supporting research aimed at finding a cure for cystic fibrosis as well providing education and raising quality of life for people with cystic fibrosis, named after Boomer Esiason, a former NFL quarterback, whose son Gunnar has cystic fibrosis.
• Lungs for Life Foundation^[8], a US-based organization focused on improving quality of life for people with CF through assistive services, education and research
• Elizabeth Nash Foundation^[9], a US-based organization focused on research, education and patient support, named after scientist Elizabeth Nash
• National Cystic Fibrosis Awareness Committee^[10] (NCFAC), a US-based group focused on increased public CF awareness through an annual national Cystic Fibrosis Awareness observance
• Rock CF Foundation^[11], a US-based non profit organization that uses the arts, entertainment, fashion and fitness to increase awareness and raise funds for cystic fibrosis. Founded by Emily Schaller.
• Liv for a Cure^[12], a US-based foundation dedicated to raising money for fight against Cystic Fibrosis.
• Liam Foundation^[13], a non-profit organization dedicated to raising money and enhancing the lives of those with Cystic Fibrosis.

Mauli ola Foundation (www.mauliola.org) Based out of Hawaii, co-chaired by pro surfer Kala Alexander, that takes kids (and adults) with CF surfing (often times with world champion surfers such as Kelly Slater and Sunny Garcia) introducing them to the natural theraputic effects of the ocean. The foundation strives to raise the awareness of CF.

International

• Cystic Fibrosis Worldwide^[14] (CFW), an international network concentrated on increasing quality of life and life expectancy for people with cystic fibrosis
• CysticFibrosis.com^[15], an internet information hub with support forums
• CysticLife.org^[16], (CL) A positive social network for the CF community where members can post blogs, ask questions, maintain a profile, contact others and search members by age, location, sex and relation to CF. It is created by the CF community for the CF community.

References