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The following organizations assist people with or conduct research on cystic fibrosis, a hereditary disease that affects the lungs and digestive system, causing progressive disability and often premature death.
Cystic fibrosis (CF) is a rare genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. The hallmark feature of CF is the accumulation of thick mucus in different organs. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections. Other signs and symptoms may include sinus infections, poor growth, fatty stool, clubbing of the fingers and toes, and infertility in most males. Different people may have different degrees of symptoms.
Norman Julius "Boomer" Esiason is an American former football quarterback who played in the National Football League (NFL) for 14 seasons, primarily with the Cincinnati Bengals. He was selected in the second round of the 1984 NFL Draft by the Bengals, where he spent 10 non-consecutive seasons. Esiason was also a member of the New York Jets and Arizona Cardinals.
The Cystic Fibrosis Trust is a UK-based national charity founded in 1964, dealing with all aspects of cystic fibrosis (CF). It funds research to treat and cure CF and aims to ensure appropriate clinical care and support for people with cystic fibrosis.
Vertex Pharmaceuticals is an American biopharmaceutical company based in Boston, Massachusetts. It was one of the first biotech firms to use an explicit strategy of rational drug design rather than combinatorial chemistry. It maintains headquarters in South Boston, Massachusetts, and three research facilities, in San Diego, California, and Milton Park, Oxfordshire, England.
Grégory Jean-Paul Lemarchal, known professionally as Grégory Lemarchal, was a French singer who rose to fame by winning the fourth series of the reality television show Star Academy, which was broadcast on the TF1.
The Cystic Fibrosis Foundation (CFF) is a 501(c)(3) non-profit organization in the United States established to provide the means to cure cystic fibrosis (CF) and ensure that those living with CF live long and productive lives. The Foundation provides information about cystic fibrosis and finances CF research that aims to improve the quality of life for people with the disease. The Foundation also engages in legislative lobbying for cystic fibrosis.
The Crohn's & Colitis Foundation (CCF) is a non-profit organization in the US that works to fund research to find cures for Crohn's disease and ulcerative colitis, as well as ways to improve the quality of life of people affected by these digestive diseases. Founded by Shelby Modell and Irwin M. Rosenthal,and formerly known as The National Foundation for Ileitis and Colitis, and The Crohn's and Colitis Foundation of America.It was incorporated on December 17, 1965.CCF has more than 50,000 members, served by the national headquarters, as well as over 40 chapters nationwide.
Venture philanthropy is a type of impact investment that takes concepts and techniques from venture capital finance and business management and applies them to achieving philanthropic goals. The term was first used in 1969 by John D. Rockefeller III to describe an imaginative and risk-taking approach to philanthropy that may be undertaken by charitable organizations.
The Arthritis Foundation is a nonprofit organization addressing the needs of people living with arthritis in the United States.
The Lupus Foundation of America (LFA), founded in 1977, is a national voluntary health organization based in Washington, D.C., with a network of chapters, offices and support groups located in communities throughout the United States. The Foundation is devoted to solving the mystery of lupus. Its mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy.
Kin Canada is a secular Canadian non-profit service organization. It promotes service, fellowship, positive values, and national pride. The members comprise Kinsmen, Kinette and Kin Clubs located throughout the country. Membership is open to all persons regardless of race, colour, or creed.
East Tennessee Children's Hospital is a private, independent, not-for-profit, 152-bed pediatric medical center in Knoxville, Tennessee. The hospital's primary service area includes 16 counties in East Tennessee, and its secondary service area includes counties in southwest Virginia, southeast Kentucky and western North Carolina.
The Fight Forever Foundation is a 501(c)(3) non-profit foundation founded to find a cure for cystic fibrosis (CF), a life-threatening, genetic lung disease affecting 100,000 people worldwide. This objective is expressed in both Danny's personal mission and the shared mission of the Foundation, "Find a Cure or Die Trying." To accomplish this mission the Foundation continues to build their International Medical Advisory Board to collectively stay abreast of the evolving advancements being made for a cure, while simultaneously raising funds, to effectively support promising advancements.
The International Myeloma Foundation (IMF) is an American non-profit organization serving patients with myeloma, a cancer of plasma cells in the bone marrow. The IMF also provides support and information for family members, caregivers of myeloma patients, physicians and nurses. The organization is dedicated to improving the quality of life for all myeloma patients by focusing on four key areas: research, education, support, and advocacy.
Cystic Fibrosis Canada is a national charitable not-for-profit corporation established in 1960.
The Canadian Lung Association is a national organization and volunteer-based health charity that supports lung health research, education, prevention of disease/disorders and advocacy in Canada.
Ivacaftor is a medication used to treat cystic fibrosis in people with certain mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, who account for 4–5% cases of cystic fibrosis. It is also included in combination medications, lumacaftor/ivacaftor, tezacaftor/ivacaftor, and elexacaftor/tezacaftor/ivacaftor which are used to treat people with cystic fibrosis.
Emily's Entourage is a nonprofit organization that raises money and awareness to help find a cure for rare ("nonsense") mutations of cystic fibrosis (CF), a genetic disorder that generally affects a person's lungs and digestive system. The foundation has raised over $1 million, largely from viral fundraising through universities and video campaigns. The organization also participates in exploratory research initiatives aimed at understanding and advancing towards a cure.
Mallory Beatrice Smith was an author and cystic fibrosis advocate.
Underrepresented populations, especially black and hispanic populations with cystic fibrosis are often not successfully diagnosed. This is in part due to the minimal dissemination of existing data on patients from these underrepresented groups. While white populations do appear to experience a higher frequency of cystic fibrosis, other ethnicities are also affected and not always by the same biological mechanisms. Thus, many healthcare and treatment options are less reliable or unavailable to underrepresented populations. This issue affects the level at which public health needs are being met across the world.