Our community’s engagement with the World Health Organization (WHO) aims to raise awareness of rare diseases, encourage the development of international and national frameworks for Persons Living with a Rare Disease and their families, and strengthen health systems to address rare diseases.
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 Collaborative Global Network for Rare Diseases (CGN) and an operational definition of rare diseases.
WHO and the Rare Disease Community
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”.
- Statement by Dr Tedros Adhanom Ghebreyesus, candidate to the position of WHO Director-General (February 2017)
- Statement for Rare Disease Day by Dr Tedros Adhanom Ghebreyesus, WHO Director-General (February 2018)
- Summary of meeting of RDI and EURORDIS-Rare Diseases Europe with Dr Tedros Adhanom Ghebreyesus, WHO Director-General (18 March 2019).
- Response to the open consultation on the Draft Concept Note towards WHO’s 13th General Programme of Work 2019–2023 (October 2017)
- Response to the open consultation on the Draft 13th General Programme of Work 2019–2023 (November 2017)
- Speech by Dr Rüdiger Krech, Director, Universal Health Coverage and Health Systems at WHO, at the European Conference on Rare Diseases & Orphan Products (Vienna, 11 May 2018).
- RDI Comments and suggestions to the WHO Public Consultation on the Draft Global Strategy on Digital Health (April 2019).
RDI and the global community of PLWRD are present at the margin’s of the WHO World Health Assembly