Donnart Alan, Viollet Viviane, Roinet-Tournay Marie
Alliance Maladies Rares, Plateforme Maladies Rares, 96, rue Didot, 75014 Paris, France.
Soins Pediatr Pueric. 2013 Sep-Oct(274):14-6.
There are between 6 000 to 8 000 rare diseases, of which 80% are of genetic origin. Most of them appear very early in life. Patients and their families are faced with diagnostic delays, inadequate management as well as a lack of information and resources.A large number of these pathologies are also sometimes called orphan diseases because the populations concerned do not find any treatments.
罕见病有6000到8000种,其中80%源于基因。大多数罕见病在生命早期就会出现。患者及其家庭面临诊断延误、治疗不足以及信息和资源匮乏的问题。许多这类病症有时也被称为孤儿病,因为相关人群找不到任何治疗方法。