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.
The statement can be read here submitted by Thalassaemia International Federation under agenda item 11.7