Rare Diseases Mentioned for the First Time at the World Health Assembly of the WHO

EURORDIS Press- Paloma Tejada, Director, Rare Diseases International (RDI), delivered an official statement at the World Health Assembly of the World Health Organization (WHO) in Geneva at the end of May. The statement is the product of a 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 EURORDIS, Ågrenska, the International Alliance of Women, the International Federation for Spina Bifida and Hydrocephalus, and RDI. The statement called on WHO Member States to “not leave behind significant but often neglected rare diseases” and to promote national rare disease strategies, advocate for available and affordable medicines, and develop synergies across borders to ensure access to timely, appropriate and effective diagnosis and treatment.