At the end of May 2018, 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. It called 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”. It also requested Member States to:
- acknowledge the severity of the problem and take action by including rare diseases in the Agenda of the upcoming third High-level Meeting on the Prevention and Control of NCDs;
- promote national strategies and plans for the management of the multiple needs of patients with rare diseases;
- advocate for the adoption of the WHO fair pricing approach by pharmaceuticals in order to guarantee access to safe and affordable orphan drugs;
- develop synergies to increase: a) their own negotiating power for procuring new medicines and health technologies and b) the access of patients to timely, appropriate and effective diagnosis and treatment.
- More information on RDI website
- Read the full statement under ” Thalassaemia International Federation”
(source: Orphanews 26 July 2018)