منابع مشابه
Rare diseases: Canada’s “research orphans”
➣ Although definitions vAry by jurisdiction, diseAses that affect approximately 1 in 2000 people are considered rare. 1 Canada is one of only a few developed countries without a national " orphan drug " program to protect patients with rare diseases from exorbitant drug costs. Public debate concerning government funding for these drugs is periodically stimulated by stories of patients who are d...
متن کاملIntractable and rare diseases research.
Intractable diseases, literally derived from the Japanese word 'nanbyo', mainly refer to rare diseases that have resulted mostly from unidentifiable causes and/or lack of clearly established or curable treatments. Currently, it is estimated that there are 5,000-7,000 distinct rare diseases worldwide, of which 80% have been identified as having genetic origins and 50% occuring in childhood and l...
متن کاملHopes for intractable and rare diseases research.
February 28, 2013 marks the sixth international "Rare Disease Day". On and around this day, hundreds of patient organizations from more than 60 countries and regions worldwide plan to host awareness campaigns in line with this year's theme, "Rare Disorders without Borders". Public awareness of intractable and rare diseases has heightened in recent decades. Much progress has also been made world...
متن کاملIntractable and rare diseases research in Asia.
Intractable and rare diseases are an important public health issue and a challenge to medical care. In recent years, much progress has been made in the United States (US), the European Union (EU), and some parts of Asia including Japan, South Korea, and Taiwan, involving specific legislation to encourage discovery and development of orphan drugs, patients' advocacy organizations to provide vast...
متن کاملDeterminants for research on rare diseases
The term rare diseases (RD) includes a wide heterogeneous group of disorders that can involve any human organ or system. In the last decade RD have been incorporated into the agenda of health-care providers and public-health authorities; however, many problems still remain to be solved and even addressed properly. Some of these issues refer to patient’ care and management such as early diagnosi...
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ژورنال
عنوان ژورنال: Chest
سال: 2013
ISSN: 0012-3692
DOI: 10.1378/chest.13-0606