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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 genetic disorder inherited in an autosomal recessive manner that impairs the normal clearance of mucus from the lungs, which facilitates the colonization and infection of the lungs by bacteria, notably Staphylococcus aureus. 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.
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 Incorporated 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 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.
Patient advocacy is a process in health care concerned with advocacy for patients, survivors, and caregivers. The patient advocate may be an individual or an organization, concerned with healthcare standards or with one specific group of disorders. The terms patient advocate and patient advocacy can refer both to individual advocates providing services that organizations also provide, and to organizations whose functions extend to individual patients. Some patient advocates are independent and some work for the organizations that are directly responsible for the patient's care.
The Crohn's & Colitis Foundation is a volunteer fueled non-profit organization in the US that works to fund research to find cures for Crohn's disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD), and to improve the quality of life of children and adults affected by these digestive diseases. Founded by Shelby and William Modell, Suzanne and Irwin Rosenthal, and Dr. Henry Janowitz, it was launched publicly on September 12, 1967, as the National Foundation for Ileitis and Colitis. It was incorporated on December 17, 1965. The Foundation serves millions of patients diagnosed with IBD in the U.S., through its national headquarters in NYC, and more than 30 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 one of national charitable but not-for-profit corporation established in 1960. Cystic Fibrosis Canada's mandate is to help individuals with cystic fibrosis, principally by funding cystic fibrosis research and care. The organization also provides educational materials for the cystic fibrosis community and the general public; undertakes advocacy initiatives with, and on behalf of Canadians with cystic fibrosis, and raises funds to support its programs.
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.