Rare Diseases International (RDI) holds an agreement with the World Health Organization (WHO) to help shape international rare disease policy and increase awareness of rare diseases, strengthen healthcare systems, encourage to adopt strategies to address rare diseases, and improve access to affordable and quality treatments and care.
In the first two years, 2020 and 2021, the focus is on facilitating efforts to develop an operational description of rare diseases based on key prevalence and incidence figures, as well as laying the groundwork for a global network of centres of excellence for rare diseases. The WHO Collaborative Global Network for Rare Diseases (CGN4RD) aims to identify, assess, support and connect centres of expertise globally through a multi-disciplinary patient-centred approach.
In this context, RDI has been consulting all stakeholders and rare disease patient organisations to design a needs assessment study for the CGN4RD in each of the six WHO regions, to propose the conceptual and methodological framework for the network. The project’s timeline aligns with the WHO’s 13th General Programme of Work 2019-2023 (GPW13) to increase the number of people benefiting from Universal Health Coverage by one billion.
A video has been made available highlighting the agreement with the WHO, the journey towards a Global Network and the importance of an operational description of rare diseases, with Yann Le Cam, EURORDIS CEO and RDI Council member, Matt Bolz Johnson, CGN4RD Advisor, and Ana Rath, Orphanet Director, available on RDI website.
(source: OrphaNews 10 May 2021)