COVID-19 Information Resource Centre

covid 19 resource centrePlease find below EURORDIS statements, sources of official information, and information/activities organised in response to the pandemic which 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

Italy's Certificate of Exemption on the vaccination

Italy has introduced a Certificate of Exemption for the COVID-19 vaccinations for people who cannot be vaccinated.

Vaccination exemption certificates already issued by the Regional Health Services are still valid until 30 November. The exemption certificate is in paper format, free of charge and does not contain the clinical reason for the exemption.

In particular, such a certificate could be used by people living with specific health conditions.

Is there a similar initiative in your country? Get in touch with us.

 

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

World Health Organisation definition of Long COVID:

Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms and that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time.

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.

Symptoms

Some of the most common symptoms include, but are not limited to; headaches, muscle and body aches, fatigue, difficulty breathing, difficulty concentrating, heart palpitations and persistent pain or pressure in the chest, amongst many others. 

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

Long Covid Europe

A European network of Long COVID patient associations run by Long COVID patients, to offer unique expertise as a patient network and gather information concerning Long COVID to curate and share with stakeholders.

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 COVID-19 related events


November 2021

Public stakeholder meeting on COVID-19 vaccines and therapeutics in the EU by EMA

25 November 2021, 13:00 - 15:15 CET, online, more information

Vaccines Today ‘The Future of Immunisation’ webinar

29 November 2021, 11:00 CET, online, more information


December 2021

COVID-19 Therapeutics - Game changers for Europe’s recovery?, online, more in

8 December 2021, 15:00 CET, online, more information


February 2022

Report launch: Hitting new heights: Improving vaccination uptake among patients with chronic conditions across Europe webinar

3 February 2022, 1.00pm – 2.30pm GMT (2.00pm – 3.30pm CET), more information

 
 
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