- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
- Services & Trainings
- Get involved
- News & Events
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.
EURORDIS COVID-19 statements
- 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 onlineJoin 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.
- World Health Organization
- European Centre for Disease Control
- US Centers for Disease Control and Prevention.
- European Commission COVID-19 response webpage
- 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:
- 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)
Update from the EMA 24/03: Some Member States are experiencing medicine supply tensions due to an increased demand for some medicines. This is either because the medicines are used to treat COVID-19 patients or because patients are requesting more than their usual supplies. In order to prevent unnecessary strain on supply chains, patients should only receive their usual supply of medicines. For information on ongoing supply tensions in the EU, patients and healthcare professionals can check the relevant national registers and EMA's catalogue.
AFM-Telethon
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.
Below is a list of information from European networks and federations.
Information from European Reference Networks:
- ERNICA COVID-19 statement (1 April)
- ERN BOND have a dedicated 24hr helpline during the coronavirus outbreak (24 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 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)
Information from international networks:
Below is a list of resources from international groups (EURORDIS Members*)
- Daily updates on COVID-19 and Duchenne & Becker muscular dystrophy (World Duchenne Organization*)
- 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)
- Webinar - WDO Webinar 2: COVID-19 and Duchenne & Becker muscular dystrophy (webinar recording, World Duchenne Organization, 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)
- 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)
- Webinar - WDO Webinar 1: COVID-19 and Duchenne & Becker muscular dystrophy (webinar recording, World Duchenne Organization, 14 March)
- Coronavirus and Mitochondrial Disease (International Mito Patients*, 13 March)
- Webinar - Coronavirus (COVID-19) and Gaucher Disease (webinar recording, Gaucher Community Alliance, 11 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*
Find out the latest news from the rare disease community! We comply with the HONcode standard for health trustworthy information
We are grateful for the financial support of the EURORDIS website by:
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