COVID-19: Resource Centre

Access online resources designed by RDI member organisations to support the rare disease community through the COVID-19 pandemic.

Developed by Rare Diseases International

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Read statement in Spanish, translated by Federación de Enfermedades Poco Frecuentes Chile (Fenpof Chile)

Read statement in Japanese, translated by ASrid (Japan Patients Association)


Developed by Regional Rare Disease Alliances

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Open letter to policy makers: Recommendations to protect people living with a rare disease during the COVID-19 pandemic

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Survey Findings “Impact of the COVID-19 pandemic on the international rare disease community”

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Survey Report “Managing Rare Diseases in Asia Pacific During COVID-19”


Developed by National Rare Disease Alliances

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“Impact of COVID-19 pandemic on patients with rare disease in Hong Kong”

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Statements from Rare Disease Patient Alliances


Statements and resources from global partners and other vulnerable groups

International Alliance of Patients’ Organizations (Information Hub)

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UHC2030, 23 March 2020 (RDI is a member of the international platform)

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International Disability Alliance (testimonies and resources)

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World Health Organization (Information Hub)


Care Guidelines from Rare Disease Patient Alliances and Disease-Specific Federations

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Other Rare Disease Resources