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 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:

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

 

#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
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*) Date
WebinarEFPIA 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
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
Activities of the members of the European Disability Forum 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  


 

(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: https://ec.europa.eu/health/ern/covid-19_en

Recordings of the European Commission's webinar series on the COVID-19 Clinical Management Support System are available via: https://ec.europa.eu/health/ern/events_en#anchor1

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

Date
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 - ERKNet: COVID-19 in Children with Kidney Disease on Immunosuppressant Medication  
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
Rare Diseases International COVID-19 resources centre  
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: COVID-19 and Duchenne & Becker muscular dystrophy (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

Daily updates on COVID-19 and Duchenne & Becker muscular dystrophy (World Duchenne Organization*)

 
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

COVID-19 resources for people with SYNGAP1 (Bridge the Gap*)

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  

 

 
 
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases