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 a statement co-created by the global rare disease community.

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

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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Results coming soon

See preliminary survey findings

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Developed by National Rare Disease Alliances

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Statements from Rare Disease Patient Alliances

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ALIBER – Iberoamerican Alliance for Rare Diseases, March 2020 (ESP)

CORD – Canadian Organization for Rare Disorders, “Applying Lessons Lessons from COVID-19 to Better Healthcare for Rare Diseases”, April 2020 (ENG)

FECOER – Colombiana de Enfermedades Raras , April 2020 (ESP)

NORD/ EURORDIS-Rare Diseases Europe Joint Statement on COVID-19 and Orphan Drug Legislation

Thalassaemia International Federation, “COVID‐19 and thalassaemia: A position statement”, June 2020

Pulmonary Hypertension Latin Society, April 2020 (ESP)


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)


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

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Instituto Vidas Raras – General Guidelines for Rare Disease Patients (ENG)

International Prader-Willi Syndrome Organisation, Care Guidelines and Information Hub (ENG)