Working with the WHO

RDI supports the World Health Organisation’s (WHO) commitment to “better health for all”. The collaboration between the global rare disease community and the WHO aims to raise awareness of rare diseases within the UN system, encourage the development of national strategies for persons living with a rare disease (PLWRD) and their families, and strengthen health systems to better address the challenges faced by PLWRD.


Agreement with the WHO

As the global alliance of rare disease patient organisations, in December 2019, RDI signed a landmark agreement for collaboration with the WHO. Activities under the Memorandum of Understanding (which has since been renewed) include establishing an international framework for defining rare diseases as well as the development of the WHO’s first global network of centres of care and pooled expertise for rare diseases.

RDI and the WHO sign MoU-shake hands
RDI (Durhane Wong-Rieger and Yann Le Cam) and WHO (Rüdiger Krech) sign Memorandum of Understanding

WHO and the Rare Disease Community

“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.

Rare diseases are increasingly seen as an area of action by the WHO, and addressing the needs of the community of persons living with a rare disease recognized as an important step towards achieving greater health for all and the transformative goal to “leave no-one behind” expressed in the UN Sustainable Development Goals 2030.

Key Documents and Milestones: