منابع مشابه
Emergence of pediatric rare diseases
In this article we discuss the steps taken by the United States (US) and the European Union (EU) to meet the health care needs of children with rare diseases and suggest possible directions for future endeavors for further improvement. We reviewed 23 reports and nine legislative documents related to pediatric rare diseases and public policy. We assessed the outcome measures of access and satisf...
متن کاملThe emergence of the cause of rare diseases and rare disease patients’ movement
Three features of the cause of rare diseases may be important for the future of the movement. 1. The category of rare diseases was originally created to remedy the problem caused by orphan drugs in the USA. The 1962 Kefauver-Harris amendments to the Food, Drug and Cosmetic Act required the company wanting to market a drug to prove its efficacy. Each drug had to be (retroactively) tested. Drugs ...
متن کاملPediatric rehabilitation in children with rare diseases--preliminary report.
As consultants in rehabilitation medicine and pediatrics sometimes we realize that most of our patients and their families are left unsupported and alone in terms of rehabilitation therapy during the treatment of their primary disease. Probably we forget that rehabilitation should be an integral part of every treatment process. In the case of rare diseases, their basic treatment should be carri...
متن کاملA Rare Case report of Neuromuscular Complications of Pediatric Lymphoma
Un enfant de 12 ans atteint d'un lymphome mediastinal a ete hospitalise pour des manifestations neurologiques comportant: facies myasthenique, douleurs radiculaires intenses, amyotrophie et diminution de la force musculaire au niveau des membres. A l'examen du liquide cephalo-rachidien, ii existait une meningite neoplasique. Celle-ci a ete traitee par le methotraxate intra-rachidien parall...
متن کاملذخیره در منابع من
با ذخیره ی این منبع در منابع من، دسترسی به آن را برای استفاده های بعدی آسان تر کنید
ژورنال
عنوان ژورنال: Rare Diseases
سال: 2013
ISSN: 2167-5511
DOI: 10.4161/rdis.23579