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.

The information on this page is updated on a weekly basis.

Use the tabs further below to navigate content.

 

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

EURORDIS COVID-19 statements

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.

 

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. From the latest EMA updates to disease-specific guides, the information found here is regularly updated to include only the most relevant puiblications. Last updated 27/04/21.

European Vaccines Information Portal (EVIP) - Available in all EU languages

List of authorised vaccines in the EU to prevent COVID-19

  • Janssen (also known as the Johnson & Johnson COVID-19 vaccine), 11 March 2021

  • Vaxzevria (also known as the AstraZeneca COVID-19 vaccine),  29 January 2021

  • Moderna, 6 January 2021

  • Comirnaty (also known as the Pfizer-BioNTech COVID-19 vaccine), 21 December 2020

More updates from the EMA

COVID-19 Vaccines Global Access (COVAX) updates

Additional Resources

General factsheets

Explanatory materials on COVID-19 vaccines

Vaccination guidelines - Ensuring equitable access to vaccines

Vaccine deployment

National regulation and guidelines on COVID-19 vaccines in Europe

 

Long COVID

COVID-19 can cause persistent ill-health. Around a quarter of people who have had the virus experience symptoms that continue for at least a month but 1 in 10 are still unwell after 12 weeks. This has been described by patient groups as “Long COVID”.

The understanding is that these symptoms are caused by a persistence of the virus in some parts of the body that are sheltered from the immune system, such as the brain; direct damage to organs, such as the heart and lungs, and also the pancreas, causing some new cases of diabetes; and blood clotting, which can cause heart attacks and strokes. However, there is a huge variety in both the pattern of symptoms and their severity.

This is a condition that can be extremely debilitating. Those suffering from it describe a varying combination of overlapping symptoms. These symptoms include generalized pain, fatigue, shortness of breath, chest pain, muscle aches, palpitations, persisting high temperature and cognitive dysfunction. It can affect anyone, but women and health care workers seem to be at greater risk.

If you have experienced any of these symptoms, persisting after you have contracted COVID-19, please find below a list of patient organisations you can get in contact with.

Organisations:

 

LongCOVID ACTS (Spain)

The Spanish collective of Long COVID sufferers.

Twitter page | Facebook page

 

 

Leben mit Corona (Switzerland)

Offers long-term sick people and their relatives support, information and help.

Website | Send an email

#ApresJ20 (France)

Information on Long COVID, specialised HCP , research and treatments.

Website | Send an email

 

Long COVID Kids (United Kingdom)

Advocacy group for kids with Long COVID.

Website | Twitter page | Facebook page

Post-COVID HUB (United Kingdom)

For people left with breathing difficulties after COVID-19, their family members, carers, healthcare professionals, policy-makers and researchers.

Website

Patient led research for COVID-19 (United Kingdom)

A self-organized group of Long COVIDpatients working on patient-led research around the Long COVIDexperience.

Website | Send an email

 

Long COVID SOS (United Kingdom)

A campaign of COVID-19 long-term sufferers to put pressure on the government to recognise the needs of those with Long COVID and raise awareness.

Website

COVID-19 support group (International)

The group consists of people from all over the world who have tested positive, are experiencing symptoms, or are recovering from COVID-19, including specific channels for Long COVID.

Website

 

Additional Resources:

 

"EURORDIS cannot respond to questions concerning the medical aspects of a disease. EURORDIS does not employ qualified medical personnel or information specialists to give medical advice, diagnose illness, or offer referrals. We strongly recommend that you seek the advice of your health care provider with questions regarding medical care"

 

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.

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.

More information

Czech Republic

Denmark

France-Alliance Maladies Rares

Germany

Hong Kong

Ireland

Italy

Japan

Netherlands

Norway

Spain

UK

USA

 

Information from European-level disease networks and federations

 

Information from European Reference Networks

 

Information from international groups

 

Upcoming events

 

 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases