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:

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:

People living with a rare disease were severely
impacted during first COVID-19 wave: 30 million people
in Europe must not be forgotten once again
11 November
Call to action for policy makers: How to protect people living with a rare disease as confinement measures are being lifted 10 June
Rare disease community appeals to EU & member states
to move into a new era of collective decision making in health
14 May
9 in 10 people living with a rare disease experiencing interruption in care because of COVID-19 4 May
EURORDIS open letter to policy makers: Recommendations to protect people living with a rare disease during the COVID-19 pandemic 8 April
Rare disease community raises alert over discrimination in critical care guidelines during COVID-19 pandemic, EURORDIS urges immediate action and proposes concrete solutions 31 March
NORD/ EURORDIS-Rare Diseases Europe Joint Statement on COVID-19 and Orphan Drug Legislation 30 March
EURORDIS urges EU not to follow in footsteps of US with orphan designation of COVID-19 treatments 25 March
A message from EURORDIS regarding the COVID-19 pandemic 17 March
Statement: European Conference on Rare Diseases & Orphan Products 2020 moves online 12 March


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.

European Commission COVID-19 response webpage

World Health Organization

European Centre for Disease Control

United Nations coronavirus resources page

OECD coronavirus website / country reports and resources
Orphanet listing of expert recommendations and services, including those provided by European Reference Networks, concerning COVID-19 and rare diseases

Information and alerts on medicines

Find more information from the medicines regulatory authority in your country. 


European Medicines Agency (EMA)

Read the EMA's latest COVID-19 news alerts, including: Date
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)
European Vaccines Information Portal (EVIP) - Available in all EU languages  
EMA starts review of dexamethasone for treating adults with COVID-19 requiring respiratory support 24 July
International regulators provide guiding principles for COVID-19 clinical trials 1 July
First COVID-19 treatment recommended for EU authorisation 25 June
Patients’ and healthcare professionals’ organisations updated on EMA’s response to COVID-19 4 June
EMA recommends expanding remdesivir compassionate use to patients not on mechanical ventilation 11 May
COVID-19: how EMA fast-tracks development support and approval of medicines and vaccines 4 May
Reporting suspected side effects of medicines in patients with COVID-19 24 April
Launch of enhanced monitoring system for availability of medicines used for treating COVID-19 24 April
COVID-19: reminder of risk of serious side effects with chloroquine and hydroxychloroquine 23 April
EMA establishes task force to take quick and coordinated regulatory action related to COVID-19 medicines 9 April
EU authorities agree new measures to support availability of medicines used in the COVID-19 pandemic 6 April
COVID-19: chloroquine and hydroxychloroquine only to be used in clinical trials or emergency use programmes 1 April
Draft points to consider on implications of Coronavirus disease (COVID-19) on methodological aspects of ongoing clinical trials 25 March
Global regulators map out data requirements for phase 1 COVID-19 vaccine trials 24 March
COVID-19: Beware of falsified medicines from unregistered websites 24 March
Guidance to sponsors on how to manage clinical trials during the COVID-19 pandemic 20 March
European Medicines Agency gives advice on the use of non-steroidal anti-inflammatories for COVID-19 18 March



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.                               

Country Information & resources






European info

Below are two tables setting out:

(i) information from European-level disease networks and federations

(ii) information from European Reference Networks.


(i) information from European-level disease networks and federations (EURORDIS Members*)

Webinar - EASPD Emergency Webinar highlighting at European level the impact of the second wave on disability services and to engage in dialogue with key stakeholders from the EU institutions. 12 November

Webinar - EFPIA Virtual Event "Cancer and COVID-19 – short term reality, long-term vision"

22 April
Webinar - EASPD: Ensuring Staff Continuity in Social Services during the COVID-19 pandemic 25 March
Webinar Marfan Europe Network* 19 March
Statement led by the European Alliance for Responsible R&D and Affordable Medicines with nearly 60 health organisations on access to vaccines and other therapeutics for COVID-19 4 May
Activities of the members of the European Disability Forum 16 April
European Patients' Forum statement: An Open Memo to the Health Industry 9 April
European Patients' Forum statement: Now is the Time to Protect Patients and Safeguard Access to Care 8 April
Childhood Cancer International - Europe*: Early advice on managing children with cancer during the COVID-19 pandemic and a call for sharing experiences 2 April
ELF (European Lung Foundation)* - Q&A: your questions answered by a respiratory expert 1 April
ESC (European Society of Cardiology) - Q&A for COVID-19 and Heart Patients  31 March
Osteogenesis Imperfecta Federation Europe (OIFE)* - COVID-19 info for people with OI 25 March
HHT Europe* - Indicazioni su Covid-19 e HHT 23 March
Cystic Fibrosis Europe* 23 March
Lupus Europe Update on Hydroxychloroquine* 21 March
Guidelines - Myeloma Patients Europe - Information on Coronavirus and Myeloma* 20 March
European Alliance Of Neuromuscular Disorders Associations* 19 March
European League Against Rheumatism (EULAR) Policy statement on COVID-19 19 March
The European Connected Health Alliance (ECHAlliance) Position Paper on the impacts of COVID-19 on European health R&I activities 18 March
Guidelines - Paediatric Rheumatology European Society (PReS) Paediatric Rheumatic Diseases - Recommendations for the COVID-19 outbreak, translated in many languages 17 March
Guidelines - European League Against Rheumatism (EULAR) Guidance for patients COVID-19 outbreak 17 March
Statement on COVID-19 from the European Cancer Organisation’s Board of Directors 17 March
European Lung Foundation*: your questions answered by a respiratory expert - available in 9 languages 16 March
European Patients’ Forum statement on COVID-19 12 March
European Haemophilia Consortium Statement* 11 March
Survey - Global Rheumatology Alliance - Surveys on how COVID-19 may affect people with rheumatic, autoimmune and autoinflammatory diseases  
SMA Europe* statement on COVID-19  
European Paediatric Neurology Society - COVID-19 and neurological disorders   
European Patients Forum - COVID-19 Resource Point  
European Lung Foundation* - COVID-19 resources  
EUnetHTA (European Network for Health Technology Assessment) COVID-19-related repository of publications and outputs  


(ii) information from European Reference Networks

The European Commission is now centralising information on what each of the ERNs is doing to help patients affected by rare diseases and COVID-19 via:

Recordings of the European Commission's webinar series on the COVID-19 Clinical Management Support System are available via:

Information from ERNs that we had already received through our network is also listed below.

Webinar - Webinar on "COVID-19 and Transplantation in Children" 23 June
WebinarWebinar on COVID-19 and Rare Connective Tissue and Musculoskeletal diseases and conditions 15 June
WebinarWebinar on Second Wave of COVID-19: Preparatory actions - Consultation with Clinicians 11 June
WebinarWebinar on the impact of COVID 19 for people living with a Rare Disease 9 June
Webinar - Webinar on “COVID-19 and the Kidney" in collaboration with ERKNet 8 June
Webinar - COVID-19 and Rare Liver Diseases 4 June
Webinar - COVID-19 and Intensive Care Medicine 2 June
Webinar - Webinar on Providing high-quality care remotely to patients with Rare Bone Diseases during COVID-19 pandemic 19 May
Webinar - 6th webinar by the “COVID-19 Clinical Management Support System” on “COVID-19: Endocrine conditions with increased risk - Endo-ERN” 12 May
WebinarWebinar on COVID-19 in patients with cardiomyopathies and myocarditis  7 May
Webinar - 4th webinar of the COVID-19 Clinical Management Support System on “COVID-19 in patients with rare diseases of the respiratory system - ERN-LUNG and the European Respiratory Society (ERS) joint webinar” 30 April

WebinarThird webinar of the COVID-19 Clinical Management Support System on “COVID-19 and anti-epileptic drugs”

27 April
Webinar - Webinar on COVID-19 and inherited arrhythmia syndromes (webinar presentations) 23 April
Webinar - Webinar on Sarcomas and COVID-19 patients 20 April
WebinarEHA & ERN-RND webinar: “Huntington’s disease and the Covid-19 pandemic - a difficult combination” (webinar recording)  6 April
MetabERN Recommendations for all Rare Inherited Metabolic Diseases patients andcaregivers about treatment adherence during the COVID-19 emergency 6 April
ERNICA COVID-19 statement 1 April
Endo-ERN information on COVID-19 pandemic 1 April
ERN EpiCARE - Recommendations for COVID-19 and epilepsy, available in multiple languages 30 March
ERN Guard article: SARS-CoV-2, COVID-19 and inherited arrhythmia syndromes 28 March
ERN BOND have a dedicated 24hr helpline during the coronavirus outbreak 24 March
ERN ITHACA - General advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders 23 March
Guidelines - COVID-19 recommendations from VASCERN's Rare Disease Working Groups 23 March
eUROGEN newsletter - European Commission launches COVID-19 Web Conferencing support system 23 March
ERN-EYE: Update about COVID-19 and Rare Eye Diseases 20 March
VASCERN HHT statement on COVID-19 20 March
ERN Rare-Liver : Information for all patients with rare liver diseases 10 March
Survey - from European Reference Network for Neuromuscular diseases to increase understanding of the effects COVID-19 has on patients with existing neuromuscular conditions  
COVID-19 information from EuroBloodNet (ERN for rare hematological diseases)  
ERN BOND: COVID-19 indications and recommendations  
Survey - ERN-LUNG called all its members to share information on their experience with COVID-19 in patients with a rare lung disease  
ERN-RND: list of official websites containing up-to-date information on the COVID-19 pandemic  
MetabERN: Recommendations for all rare inherited metabolic diseases patients and caregivers about treatment adherence during the COVID-19 emergency  



Information from international groups (EURORDIS Members*) Date
Dr. Anthony Fauci and Hastings Center president Mildred Solomon on Public Trust in Science 19 November
China Orphan Drugs Emergency Aid Project During COVID-19 Action Report  
Virtual ISPOR Europe 

16 - 19 November

(All sessions in CET)

International Congress on the Effects of COVID19 on People with Rare Diseases - Register here 9, 11 and 13 November
SARS-CoV-2 vaccines in development - Florian Krammer  
International Brain Tumour Alliance - Plain language summary for the survey results of 'Brain tumours and COVID-19: the patient and caregiver experience'  
International Youth Conference Online - "Access to healthcare" as part of "Solidarity in crisis: Humanity beyond COVID 19" 5 November
ACT-A Vaccine Pillar Civil Society Dialogue

27 October 7:00 -8:30am EDT

Rare Diseases International COVID-19 resources centre  
Daily updates on COVID-19 and Duchenne & Becker muscular dystrophy (World Duchenne Organization*)  
RDI Statement on COVID-19 response and recovery 6 July
Webinar - WDO Webinar 4: What to do about stress, anxieties and worries in COVID-19 (webinar recording, World Duchenne Organization*) 4 April
Webinar - WDO Webinar 3: how to prepare for potential DMD/BMD patients with COVID-19 (webinar recording, World Duchenne Organization*) 28 March
Webinar WDO Webinar 2: on steroids, supplements and possible treatments for COVID-19 (webinar recording, World Duchenne Organization*) 21 March
Webinar - WDO Webinar 1: COVID-19 and Duchenne & Becker muscular dystrophy (webinar recording, World Duchenne Organization*) 14 March
Webinar - Coronavirus (COVID-19) and Gaucher Disease (webinar recording, Gaucher Community Alliance) 11 March
Chronic Myeloid Leukemia (CML) and COVID-19 (updated frequently) (CML Advocates Network*) 18 April
The COVID-19 pandemic and haemoglobin disorders - Blood and COVID-19: An informational guide from TIF (Thalassaemia International Federation*) 10 April

IBTA's COVID-19 international information page - COVID-19 information for the international brain tumour community (International Brain Tumour Alliance*) 

31 March

The COVID-19 pandemic and haemoglobin disorders - a TIF-proposed Haemoglobinopathy Patient Pathway (Thalassaemia International Federation*)

30 March

Frequently Asked Questions about COVID-19 and CDG (Congenital Disorders of Glycosilation), available in multiple languages (World CDG Organization)

29 March

COVID-19 Information for the HI Community (Congenital Hyperinsulin International (CHI))

23 March

Evidence-based and expert validated information for the global primary immunodeficiency (IPOPI*)

21 March

Statement from Retina International and its Scientific and Medical Advisory Board on COVID-19 (Retina International*)

21 March

Statement from the International Gaucher Alliance on COVID-19 (International Gaucher Alliance*)

20 March

Statement on COVID-19 from the World CDG Organization, available in many languages

19 March

Guidelines Key Recommendations toward a disability-inclusive COVID-19 response (International Disability Alliance)

19 March

How is the coronavirus affecting people with Spina Bifida and Hydrocephalus? (International Federation For Spina Bifida And Hydrocephalus*) 

17 March

Coronavirus and Mitochondrial Disease (International Mito Patients*)

13 March

COVID-19 update from the World Alliance Of Pituitary Organizations (WAPO*)

11 March

Inherited Metabolic Disease and Coronavirus (COVID-19) advice for patients / parents / guardians (International Niemann-Pick Disease Alliance*) 

5 March

COVID-19 updates from the International Patient Organization For Primary Immunodeficiencies (IPOPI*)

COVID-19 advice for patient groups from the Lymphoma Coalition  

Message from the president of Thyroid Federation International*


Statement on COVID-19 from the World Federation of Incontinence Patients*

The European League Against Rheumatism (EULAR) database to monitor and report outcomes of COVID-19 occurring in patients with rheumatic and musculoskeletal diseases  
International Alliance of Patients' Organizations (IAPO) Coronavirus (COVID-19) Resources Hub  
International Federation for Spina Bifida and Hydrocephalus (IFSBH) COVID-19 resources  


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