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Groups that provide information on Cystic Fibrosis (CF) or work together on research.
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Cystic Fibrosis Foundation - Seeking the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. Providing information about the disease, treatment options, clinical trials, research, and public policy. Cystic Fibrosis Australia - Information about the organization and its aims and objectives, CF facts, events, links and contact details. Cystic Fibrosis Nurses: the International Specialist Group - Organization whose goals include setting and promoting high standards of nursing practice in the treatment of persons with Cystic Fibrosis. Boomer Esiason Foundation - A resource for those affected by this disease. Includes details about the organization, fund raising, events and a newsletter. Canadian Cystic Fibrosis Foundation - Support and resources. Located in Toronto, Ontario. Reaching Out Foundation - Provides information on the programs provided by this foundation, a personal story of a person with CF who had a double lung transplant, general information on CF, and how you can donate. Elizabeth Nash Foundation - Supports causes reflective of Elizabeth Nash's interests and values with a specific emphasis on efforts that improve the lives of those affected by Cystic Fibrosis. Chicago Cystic Fibrosis Awareness Day - Provides information about the annual educational awareness day for people with CF and their families living in the greater Chicago area. Includes links, clinical trial and archives. Concerned Friends of Cystic Fibrosis in Israel - Charitable organization that helps families in Israel who have a member suffering from CF. Includes news, medical equipment needed, and donation information. New Jersey State Organization of Cystic Fibrosis - NJSOCF provides direct, hands on financial assistance to CF patients throughout the state, counseling, referrals and educational materials to patients and their families. Includes a questions and answers, news, services offered and coming events. Cystic Fibrosis Services - A subsidiary of the Cystic Fibrosis Foundation in the United States, and a national pharmacy that offers minimal-cost medications to individuals with the disease. Utah Valley Institute of Cystic Fibrosis - Non-profit corporation dedicated to education, research, and dissemination of information to patients and their caregivers, medical professionals, and researchers. Offers introduction, research, contact information, and news releases. National Cystic Fibrosis Awareness Committee (NCFAC) - Helps to advance the public awareness of the genetic disease. Mission statement, support groups, fundraising and message boards. Cystic Fibrosis Worldwide - Organization seeking to aid people born with cystic fibrosis around the globe. Includes information on the disorder, programs, publications, fundraising, member associations and the CFW Network. Breathe for Britt Fondation - Set up in memory of Brittany F. Braun who died in 2008. BFBF assists children and adults who suffer from cystic fibrosis by providing special gift packages containing appropriate items for the patient’s comfort and enjoyment. Child Health International - CHI aims to improve healthcare for children, especially those with cystic fibrosis. Includes information on the organization and its projects, mainly in Eastern Europe. European Cystic Fibrosis Society - ECFS, aims to achieve the best possible treatment and the highest quality of life for the patient with cystic fibrosis by the development and distribution of knowledge in the field of cystic fibrosis Cochrane Cystic Fibrosis and Genetic Disorders Group - An international network of health care professionals, researchers and consumers preparing, maintaining, and disseminating systematic reviews of randomised control trials in the treatment of cystic fibrosis and other genetic disorders. European Cystic Fibrosis Thematic Network - Creates a platform for scientists involved in fundamental CF research, for the more than 160 genetic diagnostic laboratories, for CF associations of families, patients and clinicians, legal experts and representatives of the industry. Cystic Fibrosis Victoria Inc - Information about Cystic Fibrosis and the organisation, online chat room and message board. Cystic Fibrosis Trust - National charity in the United Kingdom which funds research into the disease and provides information and support for patients and families. Lungs for Life Foundation - Provides financial assistance to cystic fibrosis and lung transplant patients.
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