Agreement with the WHO

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