An upcoming webinar, a collaboration between the P4H Network and Rare Diseases International (RDI), will feature findings from a cross-country study, explores policy recommendations, and gathers insights on enhancing global advocacy, health financing and social health protection.
Rare Diseases International (RDI) and the P4H Network have partnered to enable global advocacy and collaboration to influence and support innovation in health financing arrangements and social health protection that concretely promote effective health coverage, increased access and adequate financial protection for people living with rare diseases.
RDI and P4H contacted RDI member organizations, P4H country focal persons, experts with the World Health Organization (WHO), consultants with the Organisation for Economic Co-operation and Development (OECD) and professionals to exchange information on national experiences in financing of rare diseases treatment. This information and preliminary data were reviewed and validated to develop a shortlist of countries from different regions. Then, the rare disease situation in 11 countries was documented through questionnaires and structured interviews with primary sources.
This cross-country study explores the current health financing arrangement and social health protection structure for rare diseases, existing challenges and plans for policy action in each country and region. The findings are intended to serve to inform global and national policy initiatives related to universal health coverage and rare diseases and to provide opportunities to reduce financial hardship and enhance quality of life for people living with rare diseases and their families around the world.
This webinar will introduce the RDI-P4H collaborative project and its objectives, present the preliminary results and recommendations, discuss the significance of the results among experts, and collect perspectives, comments and insights from participants and presenters to share and further refine the draft article on findings prior to its submission for publication.
