Eurordis - Rare Disease Europe

Official Sources

Below is a collection of written resources published by the European Commission, the European Court of Auditors, the World Health Organisation and the European Medicines Agency.

• European Commission – COVID-19 response webpage

1. THE ORGANISATION OF RESILIENT HEALTH AND SOCIAL CARE FOLLOWING THE COVID-19 PANDEMIC
2.  COVID-19 Health System Response Monitor – examining health system responses to COVID-19
3. The scientific, technological and societal conditions for the end of the COVID-19 crisis
4. Guidance on the management of clinical trials during the COVID-19 (coronavirus) pandemic (04 February 2021)
5. EU CCP Database – Covid-19 convalescent plasma collection and transfusion in the EU

• European Court of Auditors (ECA) – The EU’s initial contribution to the public health response to COVID-19

• World Health Organisation (WHO) – Coronavirus Pandemic page

• European Medicines Agency (EMA) – Read the EMA’s latest COVID-19 news alerts

• EUROFOUND – Eurofound – COVID-19 webpage

1. Living, working and COVID-19 (Update April 2021): Mental health and trust decline across EU as pandemic enters another year
2. COVID-19: Implications for employment and working life

Other Resources

Information from national and local rare disease patient groups

Below is the information received from national and local rare disease patient groups on the latest COVID-19 developments.

Czech Republic

• Rare Diseases Czech Republic – Aktuálně o koronaviru

Denmark

• Rare Diseases Denmark – Information om coronavirus – opdateret

France-Alliance Maladies Rares

• ENQUÊTE – maladies rares et COVID
• Maladies Rares Info Services
• AFM-Téléthon – Coronavirus : informations et recommandations

Germany

• COVID-19 Informationscenter

Hong Kong

• Study on the „Impact of the COVID-19 pandemic on patients with rare disease in Hong Kong“ in collaboration with the University of Hong Kong and Rare Disease Hong Kong

Ireland

• Rare Diseases Ireland – Resources for the rare disease community in Ireland

Italy

• UNIAMO – COVID-19 e malattie rare
• UNIAMO – COVID-19 webinars

Japan

• 希少・難治性疾患　海外動向（COVID-19

Netherlands

• VSOP – Corona-nieuws

Norway

• Norwegian Federation of Organisations of Disabled People – Korona-informasjon

Spain

• Duchenne España – COVID-19

UK

• Brittle Bone Society – COVID-19 update for people with rare bone disorders
• Ehlers Danlos Society – COVID-19 update
• Genetic Alliance UK – Information hub for COVID-19
• Genetic Alliance UK – The Rare Reality of COVID-19: COVID-19 Impact Report
• Tuberous Sclerosis Association – Coronavirus and TSC (Tuberous Sclerosis Complex)

USA

• NORD (National Organization for Rare Disorders) – COVID-19 Resource Center

Information from European-level disease networks and federations

• ESC (European Society of Cardiology) – Q&A for COVID-19 and Heart Patients
• Myeloma Patients Europe – Information on Coronavirus and Myeloma
• European Paediatric Neurology Society – COVID-19 and neurological disorders
• European Patients Forum – COVID-19 Resource Point

Information from European Reference Networks

• MetabERN – Recommendations for all Rare Inherited Metabolic Diseases patients andcaregivers about treatment adherence during the COVID-19 emergency
• ERN ITHACA – General advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders
• EuroBloodNet (ERN for rare hematological diseases) – COVID-19 information
• MetabERN – Recommendations for all rare inherited metabolic diseases patients and caregivers about treatment adherence during the COVID-19 emergency
• VASCERN – VASCERNs COVID-19 Recommendations

Information from international groups

• CML Advocates Network – Chronic Myeloid Leukemia (CML) and COVID-19
• Congenital Hyperinsulin International- COVID-19 Information for the HI Community
• European League Against Rheumatism (EULAR) – Database to monitor and report outcomes of COVID-19 occurring in patients with rheumatic and musculoskeletal diseases
• International Alliance of Patients‘ Organizations (IAPO) – Coronavirus (COVID-19) Resources Hub
• International Brain Tumour Alliance – COVID-19 information for the international brain tumour community
• International Federation for Spina Bifida and Hydrocephalus (IFSBH) – COVID-19 resources
• International Disability Alliance – Key Recommendations toward a disability-inclusive COVID-19 response
• Rare Diseases International – COVID-19 resources centre
• Thalassaemia International Federation – The COVID-19 pandemic and haemoglobin disorders
• World CDG Organization – FAQ about COVID-19 and CDG (Congenital Disorders of Glycosilation)
• World Duchenne Organization – Daily updates on COVID-19 and Duchenne & Becker muscular dystrophy