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Fibrolamellar Registry
The Fibrolamellar Registry is a 501(c)(3) non-profit organization in the United States established to bring together patients with Fibrolamellar carcinoma (FLC) and their families along with scientists and clinicians to achieve the goal of developing a diagnostic test and cure. Since FLC is a rare pediatric liver cancer, the Fibrolamellar Registry helps connect data across institutions and hospitals. The Fibrolamellar Registry does not fundraise for research. History The Registry was established in 2014 by Elana Simon along with other FLC survivors as an open-sourced data repository. The Registry is governed by patients and their families. Researchers and clinicians are allowed to use the collected data for free to advance understanding of FLC. The Registry uses a questionnaire with 600 questions, which go beyond the standard medical record to supply a rich data set for researchers and clinicians to use. The data from the Registry was used to support three research articles pu ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
501(c)(3)
A 501(c)(3) organization is a United States corporation, Trust (business), trust, unincorporated association or other type of organization exempt from federal income tax under section 501(c)(3) of Title 26 of the United States Code. It is one of the 29 types of 501(c) organization, 501(c) nonprofit organizations in the US. 501(c)(3) tax-exemptions apply to entities that are organized and operated exclusively for religion, religious, Charitable organization, charitable, science, scientific, literature, literary or educational purposes, for Public security#Organizations, testing for public safety, to foster national or international amateur sports competition, or for the prevention of Child abuse, cruelty to children or Cruelty to animals, animals. 501(c)(3) exemption applies also for any non-incorporated Community Chest (organization), community chest, fund, Cooperating Associations, cooperating association or foundation organized and operated exclusively for those purposes. [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Nonprofit Organization
A nonprofit organization (NPO), also known as a nonbusiness entity, nonprofit institution, not-for-profit organization, or simply a nonprofit, is a non-governmental (private) legal entity organized and operated for a collective, public, or social benefit, as opposed to an entity that operates as a business aiming to generate a Profit (accounting), profit for its owners. A nonprofit organization 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. Depending on the local laws, charities are regularly organized as non-profits. A host of organizations may be non-profit, including some political organizations, schools, hospitals, business associations, churches, foundations, 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 enti ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Fibrolamellar Hepatocellular Carcinoma
Fibrolamellar carcinoma (FLC) is a rare form of carcinoma that typically affects young adults and is characterized, under the microscope, by laminated fibrous layers interspersed between the tumor cells. It has been estimated that 200 new cases are diagnosed worldwide each year. However, in light of recent advances in our molecular understanding, this has recently been revised to suggest it may be at least ten times more common. FLC, also known as fibrolamellar hepatocellular carcinoma, is different from the more common hepatocellular carcinoma (HCC) in that it afflicts young people with normal liver function and no known risk factors. Cause A 2014 study showed the presence of the DNAJB1-PRKACA chimeric transcript (resulting from a 400kb somatic deletion on chromosome 19) in 100% of the FLCs examined (15/15). This gene fusion has been confirmed in many other studies.Dinh TA, Vitucci EC, Wauthier E, Graham RP, Pitman WA, Oikawa T, Chen M, Silva G, Greene KG, Torbenson MS, Reid LM, ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Chairman
The chair, also chairman, chairwoman, or chairperson, is the presiding officer of an organized group such as a board, committee, or deliberative assembly. The person holding the office, who is typically elected or appointed by members of the group or organisation, presides over meetings of the group, and is required to conduct the group's business in an orderly fashion. In some organizations, the chair is also known as '' president'' (or other title). In others, where a board appoints a president (or other title), the two terms are used for distinct positions. The term chairman may be used in a neutral manner, not directly implying the gender of the holder. In meetings or conferences, to "chair" something (chairing) means to lead the event. Terminology Terms for the office and its holder include ''chair'', ''chairman'', ''chairwoman'', ''chairperson'', ''convenor'', ''facilitator'', '' moderator'', ''president'', and ''presiding officer''. The chair of a parliamentary chamb ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
President (corporate Title)
A president is a leader of an organization, company, community, club, trade union, university or other group. The relationship between a president and a chief executive officer varies, depending on the structure of the specific organization. In a similar vein to a chief operating officer, the title of corporate president as a separate Job, position (as opposed to being combined with a "Corporate title#Senior management, C-suite" designation, such as "president and chief executive officer" or "president and chief operating officer") is also loosely Definition, defined; the president is usually the legally Legal recognition, recognized highest rank of Corporate title, corporate officer, ranking above the various Vice president#In business, vice presidents (including senior vice president and executive vice president), but on its own generally considered Hierarchy, subordinate, in practice, to the CEO. The powers of a president vary widely across organizations and such powers come fr ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Non-profit Organization
A nonprofit organization (NPO), also known as a nonbusiness entity, nonprofit institution, not-for-profit organization, or simply a nonprofit, is a non-governmental (private) legal entity organized and operated for a collective, public, or social benefit, as opposed to an entity that operates as a business aiming to generate a Profit (accounting), profit for its owners. A nonprofit organization 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. Depending on the local laws, charities are regularly organized as non-profits. A host of organizations may be non-profit, including some political organizations, schools, hospitals, business associations, churches, foundations, 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 enti ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
United States
The United States of America (USA), also known as the United States (U.S.) or America, is a country primarily located in North America. It is a federal republic of 50 U.S. state, states and a federal capital district, Washington, D.C. The 48 contiguous states border Canada to the north and Mexico to the south, with the semi-exclave of Alaska in the northwest and the archipelago of Hawaii in the Pacific Ocean. The United States asserts sovereignty over five Territories of the United States, major island territories and United States Minor Outlying Islands, various uninhabited islands in Oceania and the Caribbean. It is a megadiverse country, with the world's List of countries and dependencies by area, third-largest land area and List of countries and dependencies by population, third-largest population, exceeding 340 million. Its three Metropolitan statistical areas by population, largest metropolitan areas are New York metropolitan area, New York, Greater Los Angeles, Los Angel ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Medical Record
The terms medical record, health record and medical chart are used somewhat interchangeably to describe the systematic documentation of a single patient's medical history and health care, care across time within one particular health care provider's jurisdiction. A medical record includes a variety of types of "notes" entered over time by healthcare professionals, recording observations and administration of drugs and therapies, orders for the administration of drugs and therapies, test results, X-rays, reports, etc. The maintenance of complete and accurate medical records is a requirement of health care providers and is generally enforced as a licensing or certification prerequisite. The terms are used for the written (paper notes), physical (image films) and digital records that exist for each individual patient and for the body of information found therein. Medical records have traditionally been compiled and maintained by health care providers, but advances in online data sto ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
PubMed
PubMed is an openly accessible, free database which includes primarily the MEDLINE database of references and abstracts on life sciences and biomedical topics. The United States National Library of Medicine (NLM) at the National Institutes of Health maintains the database as part of the Entrez system of information retrieval. From 1971 to 1997, online access to the MEDLINE database was provided via computer and phone lines primarily through institutional facilities, such as university libraries. PubMed, first released in January 1996, ushered in the era of private, free, home- and office-based MEDLINE searching. The PubMed system was offered free to the public starting in June 1997. Content In addition to MEDLINE, PubMed provides access to: * older references from the print version of '' Index Medicus'', back to 1951 and earlier * references to some journals before they were indexed in Index Medicus and MEDLINE, for instance ''Science'', '' BMJ'', and ''Annals of Surg ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Uveal Melanoma
Uveal melanoma is a type of eye cancer in the uvea of the eye. It is traditionally classed as originating in the iris, choroid, and ciliary body, but can also be divided into class I (low metastatic risk) and class II (high metastatic risk). Symptoms include blurred vision, loss of vision, and photopsia, but there may be no symptoms. Tumors arise from the pigment cells that reside within the uvea and give color to the eye. These melanocytes are distinct from the retinal pigment epithelium cells underlying the retina that do not form melanomas. When eye melanoma is spread to distant parts of the body, the five-year survival rate is about 15%.Eye Cancer Survival Rates American Cancer Society, Last Medical Review: December 9, 2014 Last Revised: February 5, 2016 It is the most co ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
