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)

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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”

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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

• 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

• Pulmonary Hypertension Latin Society, April 2020 (ESP)

• Rare Disease Hong Kong, July 2020

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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)

• Thalassaemia International Federation, Resources and Statements

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Other Rare Disease Resources

• Share4Rare and patient organisations are collaborating to build a patient registry to understand how COVID-19 affects people with a rare or undiagnosed disease