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.

 

Below is a collection of EURORDIS actions and communication around the COVID-19 pandemic.

EMA Public stakeholder meetings on the development, authorisation and roll-out of safe & effective COVID-19 vaccines in the EU

The EMA listened to our call and organised a public stakeholder meeting on the development & authorisation of safe & effective COVID-19 vaccines in the EU. EURORDIS was 1 of 15 organisations who participated, represented by our Information & Access to Therapies Director & Health Policy Advisor, François Houÿez.

A second meeting on the approval and roll-out of vaccines took place on 8 January 2021 (13-15:15 CET).

Read EURORDIS' letter, with the European Patients Forum (EPF), to the EMA asking to organise multi-stakeholder meetings open to the public on vaccines to prevent SARS-CoV-2 infection.

Read EURORDIS' comments on the EMA Public stakeholder meetings titled "Putting the COVID-19 vaccines in context for people with rare diseases".

 

EURORDIS Rare Barometer survey on COVID-19

Between April and May, EURORDIS conducted a multi‐country survey highlighting the detrimental effect of the first wave of the global COVID-19 pandemic on 30 million people living with a rare disease in Europe.

  • See the final results of the survey in Europe.

  • See our statement on the final results and the second wave.

 

Monthly update: Research & development of treatments and vaccines for COVID-19

 

EURORDIS COVID-19 statements

More information

 

 

#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 and #RareDiseases so that 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.

 

Below is a collection of information, from a variety of sources, regarding the development, approval and roll-out of vaccines in Europe.

The recommendations of the ERN-Skin thematic groups for the COVID-19 vaccination of patients with rare skin diseases

 

EMA Public stakeholder meetings on the development, authorisation and roll-out of safe & effective COVID-19 vaccines in the EU

The EMA listened to our call and organised a public stakeholder meeting on the development & authorisation of safe & effective COVID-19 vaccines in the EU. EURORDIS was 1 of 15 organisations who participated, represented by our Information & Access to Therapies Director & Health Policy Advisor, François Houÿez.

A second meeting on the approval and roll-out of vaccines took place on 8 January 2021 (13-15:15 CET).

Read EURORDIS' letter, with the European Patients Forum (EPF), to the EMA asking to organise multi-stakeholder meetings open to the public on vaccines to prevent SARS-CoV-2 infection.

 

Information on the first COVID-19 vaccine, Comirnaty (4 January 2021)

  • CHMP assessment report, in English

  • Translations in all EU languages of the medicine overview

  • Translations in all EU languages of the product information

  • Full body of the core Risk Management Plan (plus Annex 4), in English

 

EMA information on the development, approval and monitoring of vaccines for COVID-19

  • Tier 1 (Basic facts on COVID-19 vaccines)

  • Tier 2 (Development, evaluation, approval & monitoring - a description of how COVID-19 vaccines are developed, approved and monitored)

 

Additional information

 

 

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

  1. European Commission

  2. European Court of Auditors

  3. World Health Organisation (WHO)

  4. European Medicines Agency (EMA)

 

European Commission

More information

 

 

European Court of Auditors (ECA)

 

World Health Organisation (WHO)

 

European Medicines Agency (EMA)

Read the EMA's latest COVID-19 news alerts

More information

 

 

Below is a collection of resources from national and local rare disease patient groups, European-level disease networks and federations, European Reference Networks and international groups who are members of EURORDIS.

  1. Information from national and local rare disease patient groups

  2. Information from European-level disease networks and federations

  3. Information from European Reference Networks

  4. Information from international groups

(EURORDIS Members*)

 

Information from national and local rare disease patient groups

 

Australia

Austria

Belgium

Brazil

Canada

Croatia

Czech Republic

Denmark

France-Alliance Maladies Rares

Germany

Hong Kong

Ireland

Italy

Japan

Latvia-Aptauju

Luxembourg

Netherlands

Norway

Portugal

Slovakia

Spain

Sweden

UK

USA

 

Information from European-level disease networks and federations

More information

 

 

Information from European Reference Networks

More information

 

 

Information from international groups

More information

 

 

Upcoming events

 

Past events

Below is an archive of recordings of events, held by a variety of organisations, on a variety of topics related to COVID-19.

More information

 

 
 
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