Memorandum of Understanding with the WHO
In December 2019, Rare Diseases International (RDI) signed a Memorandum of Understanding with the World Health Organization (WHO). The collaboration aims to shape international policy on rare diseases and strengthen health systems to address rare diseases, and advance Universal Health Coverage (UHC).
The MoU complements the WHO’s 13th General Programme of Work 2019-2023 (GPW13), which has set a goal of increasing the number of people benefiting from Universal Health Coverage by one billion.
In its third year, the agreement focuses on developing a common Operational Description for Rare Diseases and laying the groundwork for a Global Network of experts and centres of excellence for rare diseases.
WHO describes the collaboration with RDi
Recorded at the RDI Informal Side Event to the 75th WHA, 24 May 2022.
With the WHO, RDI works towards the following goals:
- 1. Increase awareness of rare diseases and their visibility in healthcare systems
- 2. Strengthen healthcare systems, including improving access to accurate diagnosis, prevention of comorbidity, and promotion of multidisciplinary holistic care
- 3. Encourage Member States to adopt strategies to address rare diseases at the national level within an international policy framework
- 4. Improve access to affordable and quality treatments and care
RDI Programmes under the WHO MoU
- Statement by Dr Tedros Adhanom Ghebreyesus, then 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).
- Meeting Summary, RDI Informal Side Event to the 75th WHA (24 May 2022)