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List Of Rare Disease Organisations
This is a list of non-profit organisations working in the area of rare diseases. International * *ICD coding for rare diseases *International Coalition of Organizations Supporting Endocrine Patients (ICOSEP) *Rare Diseases International (RDI) *International Conference on Rare Diseases & Orphan Drugs (ICORD) *NGO Committee for Rare Diseases *Global Commission to End the Diagnostic Odyssey for Children *Rare Disease Day *Asia Pacific Alliance of Rare Disease Organisations (APARDO) *International Rare Diseases Research Consortium (IRDiRC) *Orphanet *RareConnect *APEC LSIF Rare Disease Network *Indo US Organization for Rare Diseases (IndoUSrare) Africa * Foundation for Neuromuscular Support Nigeria * Rare Diseases Ghana * Hemophilia Foundation of Nigeria * Rare Disease Nigeria * Cardiac Community Asia *Organization for Rare Diseases India *Pompe Foundation India *Taiwan Foundation for Rare Disorders (TFRD) *Hong Kong Alliance for Rare Diseases (HKARD) *Illness Challenge Foundation ( ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Rare Disease
A rare disease is any disease that affects a small percentage of the population. In some parts of the world, an orphan disease is a rare disease whose rarity means there is a lack of a market large enough to gain support and resources for discovering treatments for it, except by the government granting economically advantageous conditions to creating and selling such treatments. Orphan drugs are ones so created or sold. Most rare diseases are genetic and thus are present throughout the person's entire life, even if symptoms do not immediately appear. Many rare diseases appear early in life, and about 30% of children with rare diseases will die before reaching their fifth birthdays. With only four diagnosed patients in 27 years, ribose-5-phosphate isomerase deficiency is considered the rarest known genetic disease. No single cut-off number has been agreed upon for which a disease is considered rare. A disease may be considered rare in one part of the world, or in a particular gro ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Hemophilia Foundation Of Nigeria
Haemophilia, or hemophilia (), is a mostly inherited genetic disorder that impairs the body's ability to make blood clots, a process needed to stop bleeding. This results in people bleeding for a longer time after an injury, easy bruising, and an increased risk of bleeding inside joints or the brain. Those with a mild case of the disease may have symptoms only after an accident or during surgery. Bleeding into a joint can result in permanent damage while bleeding in the brain can result in long term headaches, seizures, or a decreased level of consciousness. There are two main types of haemophilia: haemophilia A, which occurs due to low amounts of clotting factor VIII, and haemophilia B, which occurs due to low levels of clotting factor IX. They are typically inherited from one's parents through an X chromosome carrying a nonfunctional gene. Rarely a new mutation may occur during early development or haemophilia may develop later in life due to antibodies form ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
European Union Committee Of Experts On Rare Diseases
European, or Europeans, or Europeneans, may refer to: In general * ''European'', an adjective referring to something of, from, or related to Europe ** Ethnic groups in Europe ** Demographics of Europe ** European cuisine European cuisine comprises the cuisines of Europe "European Cuisine." [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
European Organisation For Rare Diseases
The European Organisation for Rare Diseases (EURORDIS) is a non-governmental patient-driven alliance of patient organizations and individuals active in the field of rare diseases, that promotes research on rare diseases and commercial development of orphan drugs. EURORDIS is dedicated to improving the quality of life of all people living with rare diseases in Europe. It was founded in 1997; it is supported by its members and by the French Muscular Dystrophy Association (AFM), the European Commission, corporate foundations and the health industry. There are an estimated 20–30 million people living with rare diseases in Europe alone, and an estimated 6,000 rare diseases. EURORDIS represents more than 960 rare disease organisations in 63 different countries (of which 26 are EU Member States), covering more than 2,000 rare diseases. EURORDIS is a development of the patient self-advocacy movement, itself widely attributed to AIDS activism. EURORDIS was the founding partner of Rare D ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Indian Organisation For Rare Diseases
Indian or Indians may refer to: Peoples South Asia * Indian people, people of Indian nationality, or people who have an Indian ancestor ** Non-resident Indian, a citizen of India who has temporarily emigrated to another country * South Asian ethnic groups, referring to people of the Indian subcontinent, as well as the greater South Asia region prior to the 1947 partition of India * Anglo-Indians, people with mixed Indian and British ancestry, or people of British descent born or living in the Indian subcontinent * East Indians, a Christian community in India Europe * British Indians, British people of Indian origin The Americas * Indo-Canadians, Canadian people of Indian origin * Indian Americans, American people of Indian origin * Indigenous peoples of the Americas, the pre-Columbian inhabitants of the Americas and their descendants ** Plains Indians, the common name for the Native Americans who lived on the Great Plains of North America ** Native Americans in ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Illness Challenge Foundation
A disease is a particular abnormal condition that negatively affects the structure or function of all or part of an organism, and that is not immediately due to any external injury. Diseases are often known to be medical conditions that are associated with specific signs and symptoms. A disease may be caused by external factors such as pathogens or by internal dysfunctions. For example, internal dysfunctions of the immune system can produce a variety of different diseases, including various forms of immunodeficiency, hypersensitivity, allergies and autoimmune disorders. In humans, ''disease'' is often used more broadly to refer to any condition that causes pain, dysfunction, distress, social problems, or death to the person affected, or similar problems for those in contact with the person. In this broader sense, it sometimes includes injuries, disabilities, disorders, syndromes, infections, isolated symptoms, deviant behaviors, and atypical variations of struc ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Hong Kong Alliance For Rare Diseases
Hong may refer to: Places *Høng, a town in Denmark * Hong Kong, a city and a special administrative region in China *Hong, Nigeria *Hong River in China and Vietnam *Lake Hong in China Surnames *Hong (Chinese name) *Hong (Korean name) Organizations *Hong (business), general term for a 19th–20th century trading company based in Hong Kong, Macau or Canton *Hongmen (洪門), a Chinese fraternal organization Creatures *Hamsa (bird), a mythical bird also known was hong *Hong (rainbow-dragon) ''Hong'' or ''jiang'' () is a two-headed dragon in Chinese mythology, comparable with rainbow serpent legends in various cultures and mythologies. Chinese "rainbow" names Chinese has three "rainbow" words, regular ''hong'' , literary ''didong'' , ..., a two-headed dragon in Chinese mythology * ''Hong'' (genus), a genus of ladybird {{disambiguation ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Taiwan Foundation For Rare Disorders
Taiwan, officially the Republic of China (ROC), is a Country, country in East Asia, at the junction of the East China Sea, East and South China Seas in the northwestern Pacific Ocean, with the China, People's Republic of China (PRC) to the northwest, Japan to the northeast, and the Philippines to the south. The Free Area of the Republic of China, territories controlled by the ROC consist of list of islands of Taiwan, 168 islands, with a combined area of . The main geography of Taiwan, island of Taiwan, also known as ''Formosa'', has an area of , with mountain ranges dominating the eastern two-thirds and plains in the western third, where its Urbanization by country, highly urbanised Demographics of Taiwan, population is concentrated. The capital, Taipei, forms along with New Taipei City and Keelung the Taipei–Keelung metropolitan area, largest metropolitan area of Taiwan. Other major cities include Taoyuan, Taiwan, Taoyuan, Taichung, Tainan, and Kaohsiung. With around 23.9 m ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
