World Health organization

Our community’s engages with the World Health Organization (WHO) to raise awareness of rare diseases, encourage the development of international and national policies for Persons Living with a Rare Disease (PLWRD) and their families, and strengthen health systems.

RDI supports the WHO’s commitment to “better health for all people everywhere”
osteogenesis imperfecta – Nepal

Agreement with the WHO

In December 2019, RDI signed a landmark agreement for collaboration with the WHO.

Activities under the Memorandum of Understanding include the development of a Global Network for Rare Diseases (CGN) and an operational definition of 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 –
WHO Director General, Dr Tedros Adhanom Ghebreyesus, Rare Disease Day Statement, February 2018.

Rare diseases and the challenges of Persons Living with a Rare Disease (PLWRD) is progressively becoming a policy priority for the United Nations and an area of action by the WHO.

Addressing the needs of PLWRD and their families is essential to achieving greater health equity and keeping the promise to “Leave No One Behind”.


RDI and the global community of PLWRD are present at the margin’s of the WHO World Health Assembly