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September 2023

Joint Statement on UHC at the United Nations

Formal statement on behalf of the NGO Committee for Rare Diseases (CONGO), EURORDIS-Rare Diseases Europe (ECOSOC “EURORDIS European organisation for Rare Diseases”), Agrenska (ECOSOC), Rare Diseases International (RDI) and the Federación Española de Enfermedades Raras (FEDER)

In this statement, presented at the high-level meeting on Universal Health Coverage (UHC) at the United Nations Headquarters in New York on 21 September 2023, the rare disease community emphasises the crucial inclusion of rare diseases in the 2023 UN Political Declaration on UHC. The statement calls for UN Member States to adopt this declaration and commit to implementing UHC for individuals living with rare diseases.

It highlights the collective impact of rare diseases, even though each one affects only a small number of patients individually. Rare diseases, which encompass genetic disorders, rare infections, poisonings, and cancers, often manifest in childhood and are characterised by their chronic, complex, and life-threatening nature. People living with these conditions frequently face obstacles in accessing necessary services and may live on the margins of society, often undiagnosed and overlooked.

The statement underscores the need for a global framework for action on rare diseases to secure funding and resources, leveraging the political will to improve the lives of individuals living with rare diseases. It argues that achieving the goal of leaving „No One Behind“ in the 2030 Agenda necessitates the robust inclusion of persons living with rare diseases in UHC packages within Member States.