WHO Global Network for Rare Diseases Workshop, December 2023

WHO Global Network for Rare Diseases Workshop, December 2023

The WHO Global Network for Rare Diseases (GNRD) envisions a world where all persons living with a rare disease (PLWRD), no matter where they live, have access to a timely and accurate diagnosis, as well as to safe and reliable quality care.

The GNRD will be a WHO network for recognised international rare disease experts and stakeholders to provide specialist advice by pooling expertise under working groups and endorse regional and global hubs of expert centres to support the strengthening of local healthcare systems in rare diseases, including improving access to accurate diagnosis, prevention of co-morbidity, and promotion of multidisciplinary holistic care. The GNRD will connect healthcare systems through the selection and endorsement process of regional networks of expert centre(s) collaborating under a “hub and spokes model” to form these regional and global Hubs.

On 14 December 2023, an informal in-person technical workshop took place at the Institute of Precision Medicine (PRISM), National Heart Centre Singapore, as a brainstorming session for a WHO-led technical meeting on the GNRD to be held in March 2024.

ERN eUROGEN was represented at the meeting by Michelle Battye, ERN eUROGEN Programme Manager, who gave a virtual presentation to the group, including how ERN eUROGEN is already collaborating internationally on virtual consultations with Pakistan and the surrounding developing regions via the ongoing CureforU collaboration.

The current Chair of the ERN Coordinators Group, Prof Holm Graessner, Coordinator of the European Reference Network for Rare Neurological Diseases (ERN-RND), was present in person, and gave a presentation about the ERN ecosystem and how it could potentially connect with the GNRD in the future.

Other participating organisations were the WHO, Rare Diseases International (a partner organisation of EURORDIS), and clinical experts from several regions (including the Americas, Europe, and the Western Pacific Regions).