Rare diseases: Challenges and resources
نویسندگان
چکیده
منابع مشابه
Resources, challenges and way forward in rare mitochondrial diseases research
Over 300 million people are affected by about 7000 rare diseases globally. There are tremendous resource limitations and challenges in driving research and drug development for rare diseases. Hence, innovative approaches are needed to identify potential solutions. This review focuses on the resources developed over the past years for analysis of genome data towards understanding disease biology...
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At least 10% of adults and nearly all children who receive renal-replacement therapy have an inherited kidney disease. These patients rarely die when their disease progresses and can remain alive for many years because of advances in organ-replacement therapy. However, these disorders substantially decrease their quality of life and have a large effect on health-care systems. Since the kidneys ...
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Rare diseases research in China can be traced back to the 1980s. Currently, control of rare diseases has become a national concern. This paper describes developments concerning rare diseases in China with regard to epidemiology, case registration, basic research, establishment of medical networks, and orphan drugs. A national program for rare disease research is being implemented in China to pr...
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The ability to attract sufficient resources to effectively develop therapeutics for rare diseases is a daunting task. This review summarizes existing resources for rare diseases and discusses some of the challenges and strategies associated with developing therapies for small patient populations with an emphasis on pachyonychia congenita.
متن کاملIdentifying specific social challenges of rare diseases: current challenges and issues
Background EURORDIS Care Survey program conducted with over 12000 patients in 23 countries (2002-2008) has concluded that «social security systems are usually designed around common diseases and are not flexible enough to take into consideration unprecedented health needs» [1] and has provided a few insights into rare diseases (RD) patients and families social challenges. Further data collectio...
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ژورنال
عنوان ژورنال: Journal of Nursing Education and Practice
سال: 2011
ISSN: 1925-4059,1925-4040
DOI: 10.5430/jnep.v1n1p1