RELEVANT INTERNATIONAL AND REGIONAL PUBLICATIONS
This list is intended to strengthen your advocacy efforts by highlighting relevant international and regional publications and statements that can support your priorities. While it adds value to your arguments, it is essential to complement it with national statements and regulations specific to your context.
DIAGNOSIS
- Inborn Errors of Immunity (IEI) classification table (2024)
- WHO Essential Diagnostics List (2023)
- WHO Resolution to strengthen diagnostics´ capacity and improve access to diagnostic services (2023)
- Solis L, Van Coillie S, et al: Newborn Screening Today and Tomorrow: A Brief Report from the International Primary Immunodeficiencies Congress (2024)
TREATMENTS
- WHO Essential Medicines List (2023)
- Council of Europe Resolution CM/Res(2015)2 on principles concerning human normal immunoglobulin therapies for immunodeficiency and other diseases (2015).
- IPOPI Statement on “Patients with PIDs should have access to safe, efficacious and high-quality immunoglobulin therapies” (2024)
- SAFE Task force* Statement on “Patients with PID need sustained & continued access to their Ig therapies!” (2021)
- SAFE Task force* Statement on “Managing demand for immunoglobulins: PIDs are a priority indication at all times” (2021)
- IPOPI publication on “Safety and Efficacy of Immunoglobulin: A Guide for Users, Assessors and Funders” (2018)
*The SAFE Task Force, launched by IPOPI in 2020, monitors plasma collection and immunoglobulin access globally. The task force includes global experts and IPOPI staff: Roberta Anido de Pena, Jose Drabwell, Nahla Ewra, Stephen Jolles, Nizar Mahlaoui, Martine Pergent, Johan Prevot, John Seymour, Surjit Singh, and Leire Solis.
UNIVERSAL HEALTH COVERAGE
- World of Health Organisation (WHO) resolution on “Social participation for universal health coverage, health and well-being” (2024)
- United Nations – Political Declaration of the High-level Meeting on Universal Health Coverage “Universal Health coverage: expanding our ambition for health and well-being in a post-COVID world” (2023)
RARE DISEASES
- United Nations Resolution on Addressing the challenges of persons living with a rare disease and their families (2021)
- European Union Council recommendation on an action in the field of rare diseases (2009)
OTHERS
- IPOPI call to action for EU Policymakers: Breaking the silence on Primary Immunodeficiencies (PIDs) and Mental Health (2023)
- IPOPI statement on “A PID causing a heavy burden of disease must always be recognised as a disability” (2023)
- Chapel H, et al: Primary immune deficiencies – principles of care (2014)
- Nordin J, et al: The PID Principles of care: Where are we now? A global status report based on the PID Life Index (2021)