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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.
The EMA listened to our call and have organised a public stakeholder meeting on the development & authorisation of safe & effective COVID-19 vaccines in the EU.
Joint invitation by EURORDIS, with the European Patients Forum (EPF), to the EMA to organise multi-stakeholder meetings open to the public on vaccines to prevent SARS-CoV-2 infection.
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
>>>> September update: Research & development of treatments for COVID-19
>>>> September update: Research & development of vaccines to prevent SARS-coV2 infection
EURORDIS COVID-19 statements:
Information sources on Kawasaki disease
EURORDIS has been contacted by different patient organisations and stakeholders regarding the potential causality link between Kawasaki disease and Coronavirus (SARS-CoV-2) infection as reported by some media. Media reports may have created confusion. These preliminary reports needs to be confirmed. Most of the reports are in the UK, though both the UK Kawasaki Foundation and the Royal College of Paediatrics and Child Health are calling for caution around that information. EURORDIS is closely monitoring the situation as members of the rare disease community may be concerned.
>>>> Please see a list of curated information sources based on all available 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 #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)
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.
European info
Below are two tables setting out:
(i) information from European-level disease networks and federations
(ii) information from European Reference Networks.
Find out the latest news from the rare disease community! We comply with the HONcode standard for health trustworthy information
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
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.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
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 initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
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.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
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 initiative