Global Genes Project
Global Genes is a global non-profit Advocacy group, advocacy organization for individuals and families fighting rare and Genetic disorder, genetic diseases. The organization is associated with a blue denim "Genes Ribbon" that is intended to raise awareness of patients affected by rare and genetic diseases. Global Genes uses a simple concept of "jeans and genes" to promote awareness of rare disease; its slogan is "Allies in Rare Disease". History The organization was founded in 2009, and is associated with several rare disease awareness campaigns a numerous fundraising efforts. The organization has gained recognition for campaigns and annual involvement in promoting Rare Disease Day. References {{reflist External linksGlobal Genes Medical and health organizations based in California Genetic diseases and disorders ... [...More Info...]       [...Related Items...]     OR:     [Wikipedia]   [Google]   [Baidu]   |
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Advocacy Group
Advocacy groups, also known as interest groups, special interest groups, lobbying groups or pressure groups use various forms of advocacy in order to influence public opinion and ultimately policy. They play an important role in the development of political and social systems. Motives for action may be based on Politics, political, religious, morality, moral, or commerce, commercial positions. Groups Methods used by advocacy groups, use varied methods to try to achieve their aims, including lobbying, media campaigns, consciousness raising, awareness raising publicity stunts, Opinion poll, polls, research, and policy briefings. Some groups are supported or backed by powerful business or political interests and exert considerable influence on the political process, while others have few or no such resources. Some have developed into important social, political institutions or social movements. Some powerful advocacy groups have been accused of manipulating the democratic syste ... [...More Info...]       [...Related Items...]     OR:     [Wikipedia]   [Google]   [Baidu]   |
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Genetic Disorder
A genetic disorder is a health problem caused by one or more abnormalities in the genome. It can be caused by a mutation in a single gene (monogenic) or multiple genes (polygenic) or by a chromosomal abnormality. Although polygenic disorders are the most common, the term is mostly used when discussing disorders with a single genetic cause, either in a gene or chromosome. The mutation responsible can occur spontaneously before embryonic development (a ''de novo'' mutation), or it can be Heredity, inherited from two parents who are carriers of a faulty gene (autosomal recessive inheritance) or from a parent with the disorder (autosomal dominant inheritance). When the genetic disorder is inherited from one or both parents, it is also classified as a hereditary disease. Some disorders are caused by a mutation on the X chromosome and have X-linked inheritance. Very few disorders are inherited on the Y linkage, Y chromosome or Mitochondrial disease#Causes, mitochondrial DNA (due to t ... [...More Info...]       [...Related Items...]     OR:     [Wikipedia]   [Google]   [Baidu]   |
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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]   |
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Awareness Campaigns
Consciousness raising (also called awareness raising) is a form of activism popularized by United States feminists in the late 1960s. It often takes the form of a group of people attempting to focus the attention of a wider group on some cause or condition. Common issues include diseases (e.g. breast cancer, AIDS), conflicts (e.g. the Darfur genocide, global warming), movements (e.g. Greenpeace, PETA, Earth Hour) and political parties or politicians. Since informing the populace of a public concern is often regarded as the first step to changing how the institutions handle it, raising awareness is often the first activity in which any advocacy group engages. However, in practice, raising awareness is often combined with other activities, such as fundraising, membership drives or advocacy, in order to harness and/or sustain the motivation of new supporters which may be at its highest just after they have learned and digested the new information. The term ''awareness raising'' is u ... [...More Info...]       [...Related Items...]     OR:     [Wikipedia]   [Google]   [Baidu]   |
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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]   |
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Medical And Health Organizations Based In California
Medicine is the science and practice of caring for a patient, managing the diagnosis, prognosis, prevention, treatment, palliation of their injury or disease, and promoting their health. Medicine encompasses a variety of health care practices evolved to maintain and restore health by the prevention and treatment of illness. Contemporary medicine applies biomedical sciences, biomedical research, genetics, and medical technology to diagnose, treat, and prevent injury and disease, typically through pharmaceuticals or surgery, but also through therapies as diverse as psychotherapy, external splints and traction, medical devices, biologics, and ionizing radiation, amongst others. Medicine has been practiced since prehistoric times, and for most of this time it was an art (an area of skill and knowledge), frequently having connections to the religious and philosophical beliefs of local culture. For example, a medicine man would apply herbs and say prayers for healing, or an ancie ... [...More Info...]       [...Related Items...]     OR:     [Wikipedia]   [Google]   [Baidu]   |