Directory of Organizations Resources

Home > Health > Conditions and Diseases > Genetic Disorders > Cystic Fibrosis > Organizations

Groups that provide information on Cystic Fibrosis (CF) or work together on research.

Resources in This Category

• Boomer Esiason Foundation

  http://www.esiason.org/
  A resource for those affected by this disease. Includes details about the organization, fund raising, events and a newsletter.

• Breathe for Britt Fondation

  http://www.breatheforbritt.org/
  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.

• Canadian Cystic Fibrosis Foundation

  http://www.cysticfibrosis.ca/
  Support and resources. Located in Toronto, Ontario.

• Chicago Cystic Fibrosis Awareness Day

  http://chicagocfawareness.org/
  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.

• Child Health International

  http://childhealthinternational.org/
  CHI aims to improve healthcare for children, especially those with cystic fibrosis. Includes information on the organization and its projects, mainly in Eastern Europe.

• Cochrane Cystic Fibrosis and Genetic Disorders Group

  http://cfgd.cochrane.org/
  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.

• Concerned Friends of Cystic Fibrosis in Israel

  http://www.cfcfisrael.org/
  Charitable organization that helps families in Israel who have a member suffering from CF. Includes news, medical equipment needed, and donation information.

• Cystic Fibrosis Australia

  http://www.cysticfibrosis.org.au/
  Information about the organization and its aims and objectives, CF facts, events, links and contact details.

• Cystic Fibrosis Foundation

  http://www.cff.org/
  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 Nurses: the International Specialist Group

  http://www.cfnurses.net/
  Organization whose goals include setting and promoting high standards of nursing practice in the treatment of persons with Cystic Fibrosis.

• Cystic Fibrosis Services

  http://www.cfservicespharmacy.com/
  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.

• Cystic Fibrosis Trust

  https://www.cysticfibrosis.org.uk/
  National charity in the United Kingdom which funds research into the disease and provides information and support for patients and families.

• Cystic Fibrosis Victoria Inc

  http://www.cysticfibrosis.org.au/vic/
  Information about Cystic Fibrosis and the organisation, online chat room and message board.

• Cystic Fibrosis Worldwide

  http://www.cfww.org/
  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.

• Elizabeth Nash Foundation

  http://elizabethnashfoundation.org/
  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.

• European Cystic Fibrosis Society

  https://www.ecfs.eu/
  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

• European Cystic Fibrosis Thematic Network

  http://cf.eqascheme.org/
  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.

• Lungs for Life Foundation

  http://www.lungsforlife.info/
  Provides financial assistance to cystic fibrosis and lung transplant patients.

• National Cystic Fibrosis Awareness Committee (NCFAC)

  http://ncfac.tripod.com/
  Helps to advance the public awareness of the genetic disease. Mission statement, support groups, fundraising and message boards.

• New Jersey State Organization of Cystic Fibrosis

  http://www.njsocf.org/
  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.

• Reaching Out Foundation

  http://www.reachingoutfoundation.org/
  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.

• Utah Valley Institute of Cystic Fibrosis

  http://members.tripod.com/uvicf/
  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.

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