February 29th is Rare Disease Day: 4 Reasons You Should Care (from Erica’s Blog)

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http://jonmcculloch.com/?svil=luxottica-opzioni-binarie&e38=f0 luxottica opzioni binarie While each individual rare disease affects only a small percentage of the population, there are over 7,000 rare diseases. When combined, they collectively affect 10% of the general population or 30 million people. Of these 30 million people, roughly half are children and 4.5 million of them won’t live to the age of five.

http://widuradio.com/?arara=%D9%83%D9%8A%D9%81-%D8%AA%D8%B1%D8%A8%D8%AD-%D8%A7%D9%84%D9%85%D8%A7%D9%84-%D9%85%D9%86-%D8%A8%D9%8A%D8%B9-%D8%A7%D9%84%D8%A3%D8%B9%D8%B4%D8%A7%D8%A8&674=9a كيف تربح المال من بيع الأعشاب When my own daughter was finally diagnosed with a rare genetic disorder known as metachromatic leukodystrophy I momentarily felt a sense of relief. The agony of watching helplessly as her health declined and visiting expert after expert who all seemed baffled by her condition appeared to be at an end. Until the neurologist’s next piece of information. The disease is terminal. And there is no cure. While our family was “lucky” to have at least had a treatment option for slowing down the disease progression, there is little to nothing the medical community can do for the vast majority of children diagnosed with a rare disorder.

http://denisehulst.nl/12-tips-om-werkstress-de-baas-te-blijven/feed/ binaire opties handleiding There are a number of barriers inherent to researching rare disorders. Patients are often scattered over a large demographic and even finding an adequate number people affected by a particular disease to conduct a well-designed clinical trial can be challenging. Additionally, medical literature describing key characteristics of a particular disease are scarce or non-existent, making it difficult for experts to build on previous knowledge. The current, traditional model of research and drug development that conceives of research results as intellectual property and sets up competition among researchers is unrealistic with such small patient populations. In order to overcome this barrier, some rare disease experts are leading advocates for revolutionary new research models that are more collaborative and open-sourced. This shift in philosophy to sharing vital research results more openly will benefit drug discovery as a whole by potentially reducing the costs and inefficiencies associated with replicating research in drug development.

binäre optionen ohne einzahlung Many rare diseases of a genetic nature are “single gene disorders”(the result of just one faulty gene). By contrast, many common diseases are polygenic (the result of the interaction of several different genes) and multi-factoral (in part due to many factors such as life-style and environment). The ability to isolate the single cause of a rare disease simplifies the research process since there are fewer variables to consider. Diseases such as Alzheimer’s and multiple sclerosis whose symptoms don’t show up until adulthood must be studied taking into account the many factors that have influenced the disease process over the course of an individual’s lifetime and may benefit from the information that could be learned from similar degenerative rare diseases.

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Hopkins parents raise awareness on Rare Disease Day (Kare11 News)

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