Paloma Tejada, Director of Rare Diseases International (RDI), delivered an official statement at the World Health Assembly of the World Health Organisation (WHO) in Geneva (Monday 21 to Friday 26 May). The statement is the product of a joint collaboration between a number of organisations holding the status of ‘special relations with the WHO’ (Thalassaemia International Federation, World Federation of Hemophilia, International Alliance of Patients’ Organizations and March of Dimes) and the umbrella organisations that are members of the NGO Committee for Rare Diseases, including Ågrenska, EURORDIS-Rare Diseases Europe, International Alliance of Women, International Federation for Spina Bifida and Hydrocephalus and Rare Diseases International.

The statement is anchored to agenda item ‘11.7 Preparation for the third High-level Meeting of the General Assembly on the Prevention and Control of Non-communicable Diseases, to be held in 2018’. It calls on Member States to “not leave behind significant but often neglected rare diseases, each of which affect relatively small numbers of patients but collectively affect at least 300 million people globally”. Key messages of the statement include: to ACKNOWLEDGE the severity of the problem; to PROMOTE national strategies; to ADVOCATE for available and affordable medicines; and to DEVELOP synergies across borders.

摘译：

Paloma Tejada，国际罕见疾病 (RDI)理事, 在日内瓦举行的世界卫生组织世界卫生大会 (2018年5月21日至 5月26日) 上发言。

该发言的重点是议程项目 11.7： 筹备2018年举行的关于预防和控制非传染性疾病的大会第三次高级别会议的准备工作。它呼吁会员国 “不留下重大但往往被忽视的罕见疾病, 每一个都影响相对较少的患者, 但总体上影响到全球至少3亿人”。声明的主要信息包括: 认识问题的严重性;促进国家战略;提倡提供可负担得起的药品;并发展跨越国界的协同作用。