RDI aims to contribute to the World Health Organisation (WHO)’s goal of “better health for everyone, everywhere” by raising awareness within the UN health agency of the specific health needs of persons living with a rare disease and working together with it to encourage global and national strategies to address them.
Rare diseases are increasingly seen as an area of action by the WHO, counting on the support of the Director-General, Dr Tedros Adhanom Ghebreyesus, since before taking office in May 2017.
“The vision of the Sustainable Development Goals is a world in which no one is left behind, including people who suffer from rare diseases. Just because a disease affects a small number of people does not make it irrelevant or less important than diseases that affect millions” Dr Tedros Adhanom Ghebreyesus, Rare Disease Day Statement, February 2018.
RDI aims to contribute to the WHO’s 13th General Programme of Work 2019-2023 and engages with different departments of the WHO Secretariat, including those of UHC/Life Course, UHC/Healthier Populations, Chief Scientist, Multilateral Affairs and Access to Medicines and Health Products, to work towards this.
In 2019, RDI signed an agreement to collaborate with the WHO. In the first year, activities under the Memorandum of Understanding (MoU) focus on harmonising the way rare diseases are defined internationally and on laying the ground for the development of a global network of centres of excellence for rare diseases.