COVID-19 Information Resource Centre

Please find below EURORDIS statements, sources of official information, and information/ activities organised in response to the pandemic that we have received through our network.

If you have any updates from the rare disease community on how your organisations are responding to the COVID-19 crisis please contact: davor.duboka@eurordis.org.

Use the tabs further below to navigate content.

 

EURORDIS COVID-19 statements

 

#StrongerTogether – share your photos online

Join us in connecting online to break the isolation we might all be feeling right now. Share a photo on social media of how you're living through the current situation - a selfie with your new work station in the background, the view from your window, a photo with your new co-workers, of the exercise or activities you're doing at home. See photos from our staff, who are all working from home across seven countries in Europe. 

Don't forget to tag #StrongerTogether #RareDiseases #Coronavirus so everyone can follow

Stay connected during the COVID-19 outbreak by reaching out to patients, families and carers via RareConnect online communities for people living with a rare disease.

 

 

Official sources of information

With the fast-evolving situation surrounding COVID-19 in Europe and across the world, members of the rare disease community may be concerned about their health. Please find below links to official information sources that are updated regularly. We also advise that you refer to information published by your own national health authorities/ ministries.

Information and alerts on medicines

Find more information from the medicines regulatory authority in your country. 

 

European Medicines Agency (EMA)

Read the EMA's latest COVID-19 news alerts, including:

 

Update from the EMA 24/03: Some Member States are experiencing medicine supply tensions due to an increased demand for some medicines. This is either because the medicines are used to treat COVID-19 patients or because patients are requesting more than their usual supplies. In order to prevent unnecessary strain on supply chains, patients should only receive their usual supply of medicines. For information on ongoing supply tensions in the EU, patients and healthcare professionals can check the relevant national registers and EMA's catalogue.

 

AFM-Telethon

 

 

 

Information from rare disease national alliances and local patient organisations

Below you will find information from national and local rare disease patient groups. See a list of national rare disease help line services.                               

Country Information & resources

Perguntas e respostas: Orientações sobre a epidemia de Coronavírus (COVID-19) para as pessoas com doenças raras e seus cuidadores (Casa Hunter, 19 March)

 

Informacije i važni linkovi – koronavirusa COVID-19 (SARS—CoV-2) (Rare Diseases Croatia, 24 March)

  

Aktuálně o koronaviru (Rare Diseases Czech Republic)

 

Information om coronavirus – opdateret (Rare Diseases Denmark, 16 March)

Stellungnahme zum Coronavirus (SARS-CoV-2, COVID-19) (Achse, 13 March)

Rare Diseases Ireland statement on coronavirus (COVID-19) (Rare Diseases Ireland, 23 March)

Par COVID-19 (Latvian Alliance for Rare Diseases)

News - COVID-19 (ALAN-Maladies Rares Luxembourg)

VSOP en de coronacrisis (VSOP, 20 March)

AKO SA SPRÁVAŤ V DOMÁCEJ IZOLÁCII (Slovak Alliance for Rare Disases)

 
 

                       

 

                                                                                

 

                                                                                 

                                                                                  

                                                                                   

 

Below is a list of information from European networks and federations.

Information from European patient groups (EURORDIS Members*) Date
Osteogenesis Imperfecta Federation Europe (OIFE) - COVID-19 info for people with OI  * 25 March
Webinar - EASPD Webinar: Ensuring Staff Continuity in Social Services during the COVID-19 pandemic 25 March
Cystic Fibrosis Europe * 23 March
Lupus Europe Update on Hydroxychloroquine* 21 March
Guidelines - Myeloma Patients Europe - Information on Coronavirus and Myeloma* 20 March
European Alliance Of Neuromuscular Disorders Associations* 19 March
European League Against Rheumatism (EULAR) Policy statement on COVID-19 19 March
WebinarMarfan Europe Network* 19 March
The European Connected Health Alliance (ECHAlliance) Position Paper on the impacts of COVID-19 on European health R&I activities 18 March
Guidelines - Paediatric Rheumatology European Society (PReS) Paediatric Rheumatic Diseases - Recommendations for the COVID-19 outbreak, translated in many languages 17 March
Guidelines - European League Against Rheumatism (EULAR) Guidance for patients COVID-19 outbreak 17 March
Statement on COVID-19 from the European Cancer Organisation’s Board of Directors 17 March
European Lung Foundation: your questions answered by a respiratory expert - available in 9 languages 16 March
Activities of the members of the European Disability Forum 16 March
European Patients’ Forum statement on COVID-19 12 March
European Haemophilia Consortium Statement* 11 March
Survey - Global Rheumatology Alliance - Surveys on how COVID-19 may affect people with rheumatic, autoimmune and autoinflammatory diseases  
SMA Europe statement on COVID-19  

 

Information from European Reference Networks:

 

 

Information from international networks: 

Below is a list of resources from international groups (EURORDIS Members*)

 
 
Die Stimme der Menschen mit seltenen Krankheiten in EuropaEURORDIS Die internationale Stimme für Menschen mit seltenen KrankheitenRare Disease International Ein moderiertes mehrsprachiges Forum, das Patienten, Familien und Experten zum Erfahrungsaustausch zusammenführt. RareConnect Das Rare Barometer Programm ist eine EURORDIS-Initiative, die Umfragen durchführt und die Erfahrungen von Patienten mit seltenen Erkrankungen in Fakten und Zahlen umwandelt, die wiederum Entscheidungsträgern vermittelt werden können.Rare Barometer Eine internationale Aufklärungskampagne, die jedes Jahr am letzten Tag im Februar stattfindet. Der Tag der Seltenen Erkrankungen ist eine EURORDIS-InitiativeRare Disease Day Nehmen Sie am größten Zusammentreffen von Interessenvertretern für seltene Krankheiten in Europa teil und besuchen Sie die zweijährliche Europäische Konferenz für Seltene Krankheiten und Orphan-Produkte (ECRD). ECRD ist eine EURORDIS-InitiativeEuropean Conference on Rare Diseases