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

.

.

.

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

.

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

.

.

---

.

.

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

.

---

.

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

---

Developed by National Rare Disease Alliances

.

.

.

.

.

---

.

,

,

,

,

---

.

,

,

---

;

;

---

.

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

;

---

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

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

• Pulmonary Hypertension Latin Society, April 2020 (ESP)

• Rare Disease Hong Kong, July 2020

---

Statements and resources from global partners and other vulnerable groups

International Alliance of Patients’ Organizations (Information Hub)

.

.

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

.

.

.

International Disability Alliance (testimonies and resources)

.

.

World Health Organization (Information Hub)

---

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

.

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

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

---

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