Rare diseases affect more than just health: they are often a source of significant financial hardship. Individuals with rare diseases face high, often catastrophic, out-of-pocket costs for medical care. Together with travel expenses and lost income for both individuals living with a rare disease and their caregivers, these costs present a massive financial burden for many households.
To ensure effective health coverage, increased access and adequate financial protection for all, we need innovative solutions. That is why the P4H Network and Rare Disease International (RDI) are partnering to enable global advocacy and collaboration to influence and support innovation in social health protection and health financing arrangements. The collaboration aims to investigate the scope, issues, needs, and existing approaches and to frame members’ interests and actions within a global perspective to promote best practices at all levels.
Through this partnership, P4H and RDI will contact P4H country focal persons and regional community managers, RDI member organizations, WHO experts, and OECD consultants and professionals to exchange information on national experiences in financing and social health protection of rare diseases. This information and preliminary data will be reviewed, validated and systematized through mapping exercises to develop a shortlist of countries with key sources for detailed information. Then, the rare disease situation in each country will be documented through questionnaires and structured interviews with primary sources.
By documenting the current financing and social health protection structure for rare diseases, existing challenges, and future plans for policy action in each country and region, P4H and RDI will investigate the impact of rare diseases on social health protection and health financing arrangements, along with financial hardship and household catastrophic health expenditure in line with the Sustainable Development Goals indicator 3.8.2 on catastrophic health spending. This data will serve as a valuable source in informing global and national policy initiatives related to Universal Health Coverage and rare diseases, providing opportunities to reduce financial hardship and enhance quality of life for Persons Living with Rare Diseases and their families around the world.
