RDI and WHO: towards a global network of centres of excellence for rare diseases

Rare Diseases International (RDI) has signed an agreement to collaborate with the World Health Organization (WHO). In the first year, activities will focus on harmonising the way rare diseases are defined internationally and on laying the ground for the development of a global network of centres of excellence for rare diseases.

Watch and Learn

Collaborations with the WHO to achieve Universal Health Coverage

Yann Le Cam, RDI Council member, outlines RDI’s agreement with the WHO. Matt Bolz Johnson, CGN4RD Advisor describes the journey towards a Collaborative Global Network and Ana Rath, Orphanet Director discusses the importance of an operational description of rare diseases as well as key prevalence and incidence figures


The first set of activities under the Memorandum of Understanding (MoU) will include developing an operational description of rare diseases based on key prevalence and incidence figures. The objective being to improve the recognition of rare disease and increase their visibility in health systems, thus better informing WHO and Member States when considering national, regional and international policy shaping and implementation.

The second set of activities in the MoU will contribute to improve the organisation of health care service delivery for rare diseases by proposing to establish a WHO Collaborative Global Network for Rare Diseases, using a structured approach to group rare diseases by therapeutic areas in order to be inclusive of all rare diseases and leave no one behind. Operationally, this will start with the preparation of a Needs Assessment Study in 2020   which will support the development of a Conceptual and Methodological Framework in 2021, that promotes the identification, assessment and support of centres of expertise that would be connected internationally into one global network.  These highly specialized centres, in turn, will act as ‘RD Global Hubs’ of reference for rare diseases in their countries and regions, while enabling and supporting local capacities to generate additional expertise.

The activities that will be carried out as part of this MoU fall within a broader longer-term strategy that lays out the following ambitious goals:

  1. Increase awareness of rare diseases and their visibility in healthcare systems;
  2. Strengthening healthcare systems, including improving access to accurate diagnosis, prevention of co-morbidity, and promotion of multidisciplinary holistic care;
  3. Improve access to affordable and quality treatments and care; and
  4. Encourage Member states to adopt strategies to address rare diseases challenges at national level within an international policy framework.

The broader plan is timed around WHO’s 13th General Programme of Work (GPW13) which runs until 2023 and seeks to increase the number of people benefiting from Universal Health Coverage by one billion, with a particular emphasis on the most vulnerable. More specifically, the actions in the MoU are intended to serve the objectives of GPW13 to strengthen healthcare systems (by fostering collaboration and aggregating expertise) and to deliver patient-centred care (by promoting a model of multi-disciplinary care that is centred on patient’s needs).