An Agreement with the WHO

Memorandum of Understanding with the WHO

Rare Diseases International has signed a Memorandum of Understanding with the World Health Organization (WHO). This collaboration aims to shape international rare disease policy and strengthen the capacity of health systems to address rare diseases.

In the first two years, activities will focus on harmonising the way rare diseases are defined internationally as well as laying the groundwork for a global network of centres of excellence for rare diseases.

Operational Description of Rare Diseases

RDI is facilitating efforts to develop an operational description of rare diseases based on key prevalence and incidence figures. This should improve the recognition of rare diseases and increase their visibility in health systems. An operational description would also help inform the WHO and Member States when considering national, regional and international policy.

WHO Collaborative Global Network for Rare Diseases (CGN4RD)

The second set of activities in the MoU focuses on the establishment of the WHO Collaborative Global Network for Rare Diseases (CGN4RD). The Network will operate through a “networked care” approach that groups rare diseases by therapeutic areas. The project aims to identify, assess and support centres of expertise connected internationally in one global network

RDI is currently consulting all stakeholders and rare disease patient organisations to design a Needs Assessment Study for the CGN4RD. The assessment will outline the rare disease community’s needs in each of the six WHO regions as well as resources and existing networks on the ground in each region.

With the WHO and all relevant stakeholders, RDI works towards the following long term goals:

1. Increase awareness of rare diseases and their visibility in healthcare system.
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 national level within an international policy framework.
4. Improve access to affordable and quality treatments and care

The plan is timed around WHO’s 13th General Programme of Work 2019-2023 (GPW13) which seeks to increase the number of people benefiting from Universal Health Coverage by one billion.

The actions in the MoU are intended to strengthen healthcare systems by fostering collaboration and aggregating expertise. The agreement should boost initiatives to deliver patient-centred care by promoting a model of multi-disciplinary care that is centred on patients’ needs.

Watch and Learn

Yann Le Cam, EURORDIS CEO and RDI Council member, outlines the agreement with the WHO. Matt Bolz Johnson, CGN4RD Advisor, describes the journey towards a Global Network and Ana Rath, Orphanet Director, discusses the importance of an operational description of rare diseases.