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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.
EURORDIS co-hosts webinar with European Commission on Impact of COVID-19
EURORDIS is co-hosting a webinar with DG Santé of the European Commission on 9 June to present to clinicians and wider audiences on "The impact of #COVID19 for people living with a Rare Disease".
Sandra Courbier, Social Research Director, will present results from our COVID-19 survey by ERN disease grouping.
More information and registration.
EURORDIS Rare Barometer survey on COVID-19
Are you affected by a rare disease or caring for someone affected by a rare disease?
>>>> See preliminary results from the survey.
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.
EURORDIS weekly update on products in development for the treatment of COVID-19:
EURORDIS is producing a weekly update on the development of products for the treatment of COVID-19.
Read the latest update (13 May).
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)
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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This website received funding under an operating grant from the European Union’s Health Programme (2014-2020)
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