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European Society For Phenylketonuria And Allied Disorders Treated As Phenylketonuria
The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) is a Europe-based Nonprofit organization, non-profit organization. It was founded in 1987 by patient-driven associations to help improve the treatment of phenylketonuria (PKU) in Europe. Organization The E.S.PKU has 41 member organizations from across Europe. One of the later countries to join was the French association Les Feux Follets in 2013. A member organization has to be a non-profit organization on a national level dealing with phenylketonuria patients. The E.S.PKU executive board is elected by the annual general meeting every three years and consists of volunteers. The Scientific advisory committee oversees projects like the European Guidelines and collects data to support studies in the field of phenylketonuria. Besides the political work (such as METAB-ERN or EXCEMED) on European level, the E.S.PKU hosts an annual conference. Projects Benchmark report The E.S.PKU ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Nonprofit Organization
A nonprofit organization (NPO) or non-profit organisation, also known as a non-business entity, not-for-profit organization, or nonprofit institution, is a legal entity organized and operated for a collective, public or social benefit, in contrast with an entity that operates as a business aiming to generate a Profit (accounting), profit for its owners. A nonprofit is subject to the non-distribution constraint: any revenues that exceed expenses must be committed to the organization's purpose, not taken by private parties. An array of organizations are nonprofit, including some political organizations, schools, business associations, churches, social clubs, and consumer cooperatives. Nonprofit entities may seek approval from governments to be Tax exemption, tax-exempt, and some may also qualify to receive tax-deductible contributions, but an entity may incorporate as a nonprofit entity without securing tax-exempt status. Key aspects of nonprofits are accountability, trustworth ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Phenylketonuria
Phenylketonuria (PKU) is an inborn error of metabolism that results in decreased metabolism of the amino acid phenylalanine. Untreated PKU can lead to intellectual disability, seizures, behavioral problems, and mental disorders. It may also result in a musty smell and lighter skin. A baby born to a mother who has poorly treated PKU may have heart problems, a small head, and low birth weight. Phenylketonuria is an inherited genetic disorder. It is due to mutations in the '' PAH'' gene, which results in low levels of the enzyme phenylalanine hydroxylase. This results in the buildup of dietary phenylalanine to potentially toxic levels. It is autosomal recessive, meaning that both copies of the gene must be mutated for the condition to develop. There are two main types, classic PKU and variant PKU, depending on whether any enzyme function remains. Those with one copy of a mutated gene typically do not have symptoms. Many countries have newborn screening programs for the disease. ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
European Parliament
The European Parliament (EP) is one of the legislative bodies of the European Union and one of its seven institutions. Together with the Council of the European Union (known as the Council and informally as the Council of Ministers), it adopts European legislation, following a proposal by the European Commission. The Parliament is composed of 705 members (MEPs). It represents the second-largest democratic electorate in the world (after the Parliament of India), with an electorate of 375 million eligible voters in 2009. Since 1979, the Parliament has been directly elected every five years by the citizens of the European Union through universal suffrage. Voter turnout in parliamentary elections decreased each time after 1979 until 2019, when voter turnout increased by eight percentage points, and rose above 50% for the first time since 1994. The voting age is 18 in all EU member states except for Malta and Austria, where it is 16, and Greece, where it is 17. Although the E ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
The Lancet
''The Lancet'' is a weekly peer-reviewed general medical journal and one of the oldest of its kind. It is also the world's highest-impact academic journal. It was founded in England in 1823. The journal publishes original research articles, review articles ("seminars" and "reviews"), editorials, book reviews, correspondence, as well as news features and case reports. ''The Lancet'' has been owned by Elsevier since 1991, and its editor-in-chief since 1995 has been Richard Horton. The journal has editorial offices in London, New York City, and Beijing. History ''The Lancet'' was founded in 1823 by Thomas Wakley, an English surgeon who named it after the surgical instrument called a lancet (scalpel). Members of the Wakley family retained editorship of the journal until 1908. In 1921, ''The Lancet'' was acquired by Hodder & Stoughton. Elsevier acquired ''The Lancet'' from Hodder & Stoughton in 1991. Impact According to the ''Journal Citation Reports'', the journal has a 202 ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Orphanet Journal Of Rare Diseases
The ''Orphanet Journal of Rare Diseases'' is a peer-reviewed open access medical journal covering research on rare diseases. It was established in 2006 and the editor-in-chief is Francesc Palau (Hospital Sant Joan de Déu Barcelona and CIBERER, Spain). It is an official journal of Orphanet and is published by BioMed Central, which is part of Springer Nature. Aims, scope and content By its own definition, Orphanet Journal of Rare Diseases is an open access, peer-reviewed journal that encompasses all aspects of rare diseases and orphan drugs. The journal publishes reviews on specific rare diseases, as well as articles on clinical trial outcome reports (positive or negative), and articles on public health issues in the field of rare diseases and orphan drugs. Readers can find contributions which are directly from patients affected by a rare disease or about events, such as the Rare Disease Day. Readers also have the possibility to search articles according to their subject or have t ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Rare Disease Day
Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. The European Organisation for Rare Diseases established the day in 2008 to raise awareness for unknown or overlooked illnesses. According to that organization, treatment for many rare diseases is insufficient, as are the social networks to support individuals with rare diseases and their families; furthermore, while there were already numerous days dedicated to individuals with specific diseases (such as AIDS, cancer, etc.), there had previously not been a day for representing those affected by rare diseases. In 2009, Rare Disease Day went global as the National Organization for Rare Disorders mobilized 200 rare disease patient advocacy organizations in the United States while organizations in China, Australia, Taiwan, and Latin America also lead efforts in their resp ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Robert Guthrie
Robert Guthrie, MD, Ph.D. (June 28, 1916 – June 24, 1995) was an American microbiologist, best known for developing the bacterial inhibition assay used to screen infants for phenylketonuria at birth, before the development of irreversible neurological damage. Guthrie also pioneered the collection of whole blood on specially designed filter paper, commonly known as "Guthrie cards" as a sample medium that could be easily collected, transported and tested. Although Guthrie is best known for developing the test for phenylketonuria, he worked tirelessly to raise awareness of the need to screen for treatable conditions and adapted his method to early screening tests for galactosemia and maple syrup urine disease. Early life Guthrie received his doctorate from the University of Minnesota, although his education took a circuitous route, as he eventually earned six degrees in six years, including both a medical doctorate and a doctor of philosophy. While in school, Guthrie married ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Horst Bickel
Horst Bickel (28 June 1918 – 1 December 2000) was a German medical doctor. With Guido Fanconi, he characterized Glycogen storage disease type XI in 1949. He was also involved in the development of treatments for phenylketonuria. In 1951, Bickel, Evelyn Hickmans and John Gerrard were persuaded by a persistent mother to help her daughter, Sheila, who was suffering from phenylketonuria. They created a diet that was low in phenylalanine and the daughter's condition improved. Bickel, Gerrard and Hickmans were awarded the John Scott Medal in 1962 for their discovery. His birthday, 28 June, which he shares with Robert Guthrie, another important person for Phenylketonuria was taken up by the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) is a Europe-based Nonprofit organization, non-profit organization. It was founded in 1987 by patient-driv ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Venice
Venice ( ; it, Venezia ; vec, Venesia or ) is a city in northeastern Italy and the capital of the Veneto Regions of Italy, region. It is built on a group of 118 small islands that are separated by canals and linked by over 400 bridges. The islands are in the shallow Venetian Lagoon, an enclosed bay lying between the mouths of the Po River, Po and the Piave River, Piave rivers (more exactly between the Brenta (river), Brenta and the Sile (river), Sile). In 2020, around 258,685 people resided in greater Venice or the ''Comune di Venezia'', of whom around 55,000 live in the historical island city of Venice (''centro storico'') and the rest on the mainland (''terraferma''). Together with the cities of Padua, Italy, Padua and Treviso, Italy, Treviso, Venice is included in the Padua-Treviso-Venice Metropolitan Area (PATREVE), which is considered a statistical metropolitan area, with a total population of 2.6 million. The name is derived from the ancient Adri ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Organizations Established In 1987
An organization or organisation (Commonwealth English; see spelling differences), is an entity—such as a company, an institution, or an association—comprising one or more people and having a particular purpose. The word is derived from the Greek word ''organon'', which means tool or instrument, musical instrument, and organ. Types There are a variety of legal types of organizations, including corporations, governments, non-governmental organizations, political organizations, international organizations, armed forces, charities, not-for-profit corporations, partnerships, cooperatives, and educational institutions, etc. A hybrid organization is a body that operates in both the public sector and the private sector simultaneously, fulfilling public duties and developing commercial market activities. A voluntary association is an organization consisting of volunteers. Such organizations may be able to operate without legal formalities, depending on jurisdiction, includin ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
1987 Establishments In Belgium
File:1987 Events Collage.png, From top left, clockwise: The MS Herald of Free Enterprise capsizes after leaving the Port of Zeebrugge in Belgium, killing 193; Northwest Airlines Flight 255 crashes after takeoff from Detroit Metropolitan Airport, killing everyone except a little girl; The King's Cross fire kills 31 people after a fire under an escalator Flashover, flashes-over; The MV Doña Paz sinks after colliding with an oil tanker, drowning almost 4,400 passengers and crew; Typhoon Nina (1987), Typhoon Nina strikes the Philippines; LOT Polish Airlines Flight 5055 crashes outside of Warsaw, taking the lives of all aboard; The USS Stark is USS Stark incident, struck by Iraq, Iraqi Exocet missiles in the Persian Gulf; President of the United States, U.S. President Ronald Reagan gives a famous Tear down this wall!, speech, demanding that Soviet Union, Soviet leader Mikhail Gorbachev tears down the Berlin Wall., 300x300px, thumb rect 0 0 200 200 Zeebrugge disaster rect 200 0 400 200 ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Health Advocacy Groups
Health, according to the World Health Organization, is "a state of complete physical, mental and social well-being and not merely the absence of disease and infirmity".World Health Organization. (2006)''Constitution of the World Health Organization''– ''Basic Documents'', Forty-fifth edition, Supplement, October 2006. A variety of definitions have been used for different purposes over time. Health can be promoted by encouraging healthful activities, such as regular physical exercise and adequate sleep, and by reducing or avoiding unhealthful activities or situations, such as smoking or excessive stress. Some factors affecting health are due to individual choices, such as whether to engage in a high-risk behavior, while others are due to structural causes, such as whether the society is arranged in a way that makes it easier or harder for people to get necessary healthcare services. Still, other factors are beyond both individual and group choices, such as genetic disorders. ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
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