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:

The information on this page is updated on a weekly basis.

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Below is a collection of EURORDIS actions and communication around the COVID-19 pandemic.

Monthly update: Research & development of treatments and vaccines for COVID-19

May update: Research & development of vaccines to prevent SARS-coV2 infection

EURORDIS COVID-19 statements

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.


EMA Public stakeholder meetings on the development, authorisation and roll-out of safe & effective COVID-19 vaccines in the EU

The EMA listened to our call and organised a public stakeholder meeting on the development & authorisation of safe & effective COVID-19 vaccines in the EU, on the 8th January 2021. EURORDIS was 1 of 15 organisations who participated, represented by our Information & Access to Therapies Director & Health Policy Advisor, François Houÿez. To read more about this meeting and watch the recording please click here

#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 and #RareDiseases so that 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.


Below is a collection of information, from a variety of sources, regarding the development, approval and roll-out of vaccines in Europe. From the latest EMA updates to disease-specific guides, the information found here is regularly updated to include only the most relevant puiblications. Last updated 27/04/21.

European Vaccines Information Portal (EVIP) - Available in all EU languages

List of authorised vaccines in the EU to prevent COVID-19

  • Janssen (also known as the Johnson & Johnson COVID-19 vaccine), 11 March 2021

  • Vaxzevria (also known as the AstraZeneca COVID-19 vaccine),  29 January 2021

  • Moderna, 6 January 2021

  • Comirnaty (also known as the Pfizer-BioNTech COVID-19 vaccine), 21 December 2020

Q & A from the European Medicines Agency (EMA)

Which populations are defined as vulnerable?


Different vulnerability levels will probably guide the prioritisation of people to vaccinate.

Age is certainly a criteria that will help define the most at risk populations in whom the initial benefit/risks will be positive with no dispute.

The number of conditions also increases the risk of being hospitalised.

Therefore, all organisations representing rare diseases are questioning whether the people they represent should be defined as vulnerable groups who should be vaccinated soon, or very soon.

Even when not immediately described by one of these conditions, risks could be increased. For example, people with Osteogenesis imperfecta have restricted pulmonary functions (due to scoliosis and shape of the rib cage), so if infected with the coronavirus, the disease might be worse than a normal person.


The EMA is not involved in decisions on prioritisation of groups for vaccination. For patients with certain conditions, the risk of developing serious complications with COVID-19 may be increased. Unfortunately, there may not be comprehensive knowledge of the course of COVID-19 in patients with rare diseases and we recommend following the recommendations provided by national authorities and healthcare professionals. It would be logical to apply a precautionary principle when taking clinical decisions, for example for very fragile or vulnerable patients the prescriber will need to consider the benefits and risks of vaccination versus the individual risk of contracting COVID-19 disease.

How will my age affect when I get the vaccine?


Vaccines should first be authorised for adults, then data will be available for adolescent from 16 to 18 years of age, and then for younger citizens. It would be important to provide families with estimated timelines on when results in younger age groups will be available to the EMA COVID-19 Task Force, and when the CHMP could extent the indication to these age groups. Some adults living with a rare disease might opt to defer the vaccination for some reasons explained below, but to protect them, it could be important to propose the vaccine to their children, when available.


At present it is not known whether and when vaccines will be authorised for use in children. Some currently ongoing trials are enrolling some adolescents. In general, the use of COVID-19 vaccines in children will be investigated once there is sufficient information from studies in adults and in adolescents above 16 years of age. EMA’s Paediatric Committee (the PDCO) can grant deferrals of studies in paediatric investigation plans (PIPs) for some medicines. Deferrals allow a company to delay development of the medicine in children until, for instance, there is enough information to demonstrate its effectiveness and safety in adults. Even when studies are deferred, the PIP includes details of the paediatric studies and their timelines. The PIPs for each vaccine will be published and will include these timelines. Existing PIPs are linked below:

  • The date of completion of the PIP for Pfizer-BioNTech BNT162b2 is July 2024

  • The date of completion of the PIP for Moderna (mRNA-1273) is December 2024

Is housing considered as a variable in COVID-19 vaccine prioritisation?


Prioritisation should recognise that a healthy older person who can shelter in place is at different risk from a medically vulnerable older person in crowded housing. It would be important to analyse the efficiency of the vaccines in different settings.


EMA is not involved in setting priority groups for receiving the vaccine. These are under the remit of the relevant national authority, who will consider many factors including the need to protect groups of people at higher risk. As mentioned earlier, we would recommend EURORDIS to address this with the relevant body setting immunisation policies in the member state of interest.

The safety and efficacy of the COVID-19 vaccines are studied in different populations, including different age groups, ethnicities and genders as well as different co-morbidities. The effect of different environmental settings as such has not been specifically addressed, although some trials have enrolled individuals at higher risk of exposure to the virus, such as health care workers.

Studies in specific populations not sufficiently included in trials and longer-term studies will continue after authorisation, as for all medicines. Post-authorisation observational studies of effectiveness will show how well the vaccine works in real-life settings (i.e. outside the controlled setting of clinical trials) and on specific populations, such as in people with certain diseases or living in long-term care facilities for example, which could provide useful information with respect to your question.

How can we improve public trust in the vaccines?


Some expressed concerns about a supposed “collusion between the pharmaceutical industry and governments”, and other interests than public health would prevail. EURORDIS does not subscribe to this theory, and stresses the importance to be able to choose between different vaccines, after discussing the different options with your own doctor, instead of a mandatory vaccination campaign with one product only. This might not be in the remit of the EMA, however it could be useful to publish a comparative information leaflet, that would combine the elements of the different package leaflets.


Many different types of vaccines for COVID-19 are under development and it is expected that some would be more suited to certain populations. We agree that it would be desirable if patients, including those in the rare disease community could choose among different options. This however is not within EMA’s remit and is something we would advise EURORDIS to discuss at national level with bodies responsible for immunisation policy.

Medical advice regarding a choice between the different available vaccines should be made in consultation with the healthcare professional who knows the medical history of the patient and is therefore best placed to provide advice. In addition, the risk of exposure to COVID-19 disease will probably be taken into account. The prescribing information and package leaflet, which are approved as part of the marketing authorisation, are useful to support this decision and consultation.

As for other medicines, EMA will not be able to provide a comparative information leaflet as part of the marketing authorisation. It is not in the remit of the EMA to perform comparative analysis across medicinal products, however this can be done by public health bodies at the national or European level.

Does the AstraZeneca vaccine affect my eligibility for gene therapies?


There is a growing concern in several rare diseases groups around the AstraZeneca vaccine (and it will probably be the same with the Janssen one also) because of the use of adeno-associated virus as viral vector. Some people realized this could be an issue for a potential eligibility for a gene therapy if the gene therapy uses same AAV vector due to immunogenicity.


We cannot provide definitive answers at this stage because the assessment of the first 2 COVID-19 vaccines based on adenoviral vectors is currently ongoing. The risk of developing immune responses against the vaccine vector is under consideration and will be discussed in light of the available evidence. Theoretically such immune responses might affect how well people may respond to subsequent doses of the vaccine. If such a risk is found, it will be adequately reflected in the EPAR documents. Any contraindications, special warnings or undesirable effects will also be detailed in the prescribing information and package leaflet.

Knowledge on use of adenovirus-based vaccines is also available from other adenovirus-based vaccines currently authorised in EU, most recently the Ebola vaccine Zabdeno. In that context, pre-existing immune responses against adenovirus type 26 (Ad26) used in Zabdeno were assessed in several clinical trials, and in the UK and US studies antibodies were present in few participants (3% - 13%), at low titres, prior to vaccination. Such pre-existing immunity was found not to have any impact on the Ebola-specific antibodies and cell-mediated responses triggered by the vaccine.

Some rare conditions are known to increase the risk of anaphylactic reactions; they can predispose to hypersensitivity. Will patients with these conditions be warned of this?


Allergic reactions (hypersensitivity) have been seen in people receiving the two authorised vaccines (both mRNA vaccines), and a very small number of cases of anaphylaxis (severe allergic reaction) have occurred. Therefore, as for all vaccines, COVID-19 vaccines should be given under close medical supervision, with the appropriate medical treatment available. The product information for the vaccines also states that people should be closely monitored for at least 15 minutes following vaccination. In addition, people who have a severe allergic reaction when they are given the first dose should not receive the second dose. More detailed guidance for healthcare professionals and general public on how to manage potential allergic reactions during the administration of the vaccine will be made available by authorities responsible for immunisation policy at national level.

EMA is evaluating COVID-19 vaccines in the context of a conditional marketing authorisation. This has all the safeguards and controls in place to enable thorough post-authorisation safety monitoring through the collection of additional data in a planned manner. Such safety monitoring will take place more frequently and will include activities that apply specifically to COVID-19 vaccines. Companies for example will provide monthly safety reports in addition to the regular updates required by the legislation and conduct studies to monitor the safety and effectiveness of COVID-19 vaccines after their authorisation. In addition, [independent studies] of COVID-19 vaccines coordinated by EU authorities will give more information on the vaccine’s long-term benefit and safe use. These efforts should identify any risks in a timely manner and provide further information on more vulnerable populations, although it may not be possible to address all the existing diseases.

Do the vaccines pose a particular threat to people with rare epilepsies?


As fever seems to be a common side effect to all COVID-19 vaccines, and fever can trigger seizures in patients with rare or common epilepsies, appropriate and close monitoring of this side effect might be needed for this group as part of the pharmacovigilance activities.

For Dravet syndrome in particular, one question is about vaccines using the mRNA technology, and to which extend this could interfere with antisense therapies also based on the mRNA technology.


Many patients with rare diseases, such as Dravet syndrome, will not have been specifically studied in COVID-19 vaccine clinical trials. There is also no data available on whether mRNA vaccines might potentially interfere with mRNA therapies. It would be important to highlight all these concerns to the healthcare professional/prescriber to ensure the patient’s specific conditions can be taken into account.

Fever is a side effect of the authorised COVID-19 vaccines. Once a vaccine is authorised and starts to be used in the general population, additional data will be generated on the vaccine’s side effects, as well as long-term safety and benefit, both via safety studies and enhanced safety surveillance. This will help further informing on the side effects and use in special populations.

Will the vaccine affect my preexisting treatment plan?


Hereditary Haemorrhagic Telangiectasia (HHT), rare cancers, immune deficiencies, lupus: blood transfusions and immuno-suppressant are standard of care. Will patient need to stop their treatments before receiving the vaccine, and how long before? When can they resume their treatments safely? Would the recommendation apply to all vaccines equally?

The same questions for Auto-inflammatory diseases: is there a need to stop anti-inflammatory treatment before? How long before, when can they be started again?

Rare cancers, melanomas: trials explicitly excluded people with a history of cancer, therefore no data about how effective and safe the vaccines are in people with any kind of e.g. (rare) melanoma. Immunotherapy is a treatment modality that is being used on rare melanomas and although immune checkpoint inhibitors do not cause immunosuppression, they can cause immune-related adverse effects in organ systems. This could constitute a risk regarding vaccination-related complications.


The efficacy, safety and immunogenicity of the COVID-19 vaccines so far authorised have not been assessed in immunocompromised individuals, including those receiving immunosuppressant therapy. The efficacy of a vaccine may be lower in immunosuppressed individuals. However, although immunocompromised people may not respond as well to the vaccine, there are no particular safety concerns for the authorised vaccines.

As we have noted, there is limited data in many disease-specific settings. We would refer patients with specific diseases to the product information of each vaccine. EMA cannot advise on the management of specific pathologies beyond the information which is available in the product information.

In addition, questions on clinical practice are outside the remit of EMA. Since many rare disease patients will not have been sufficiently studied in clinical trials, it is important to highlight all these concerns to the healthcare professional/prescriber to ensure specific conditions can be taken into account. Questions concerning patient’s current treatment for existing conditions, whether they should stop before vaccination or when to resume should be discussed with their healthcare professional based on the information in the product information and in line with available advice at national level.

How is the safety of the vaccine for people with Neurological diseases being considered?


In the past, some concerns were shared by a large part of the population and by many healthcare professionals on the possible neuro-toxicity of some vaccines, e.g. vaccine for Hepatitis B infection. Even if these risks were further analysed and finally, the perception prevails in the population.

Are specific monitoring measures planned for patients with neurological diseases, to characterise these risks, or the absence of risks?

People who had an episode of Guillain Barre syndrome for example often renounce to vaccines, and struggle to access the information they need.


This has been brought to the attention of EMA’s safety committee (the Pharmacovigilance Risk Assessment Committee, PRAC) for consideration during assessment of the Risk Management Plan (RMP).

Safety data will be collected through spontaneous systems and observational studies, both of which will allow for stratified analyses, detailed in EMA’s Pharmacovigilance plan for COVID-19 vaccines.

Will my Haemophilia affect my vaccine eligibility?


The Federation indicated some information people with haemophilia will need:

Warnings about people with bleeding disorders to alert on the possibility of an intramuscular haematoma. One measure could be too recommend applying pressure or giving factor replacement coverage to prevent bleeding.

People with bleeding disorders should still be vaccinated according to their priority group (based on age, co-morbidities and healthcare work).

The vaccine should be administered with a thin needle and very slowly.

Having a bleeding disorder should not be a contra-indication to receiving the COVID-19 vaccine.

Any vaccines using AAV can trigger AAV immunity and should only be given to patients who are informed about, and consent to the risk of never being eligible for AAV-based gene therapy


There are no contraindications for the COVID-19 vaccines authorised so far except for hypersensitivity to the active substance or to any of the excipients.

As with other intramuscular injections, the authorised vaccines should be given with caution in individuals receiving anticoagulant therapy or those with thrombocytopenia or any coagulation disorder (such as haemophilia) because bleeding or bruising may occur following an intramuscular administration in these individuals.

The Agency is not be able to advise on the management of specific pathologies such as haemophilia beyond the information which is available in the product information.

Also questions on clinical practice are outside the remit of EMA. Since many rare disease patients will not have been sufficiently studied in clinical trials, it would be important to highlight all these concerns to the healthcare professional/prescriber to ensure specific conditions can be taken into account.

When will my child get a vaccine?


The paediatric investigation Plans for vaccines for COVID-19 are due in 2024. Children living with a rare disease are vulnerable populations as probably at higher risk of severe COVID-19. They might not want to wait until 2024. Which clinical development is planned? Are clinical efficacy and safety data needed (long development), or would immunogenicity data followed by for example an open label safety study suffice?


PIPs are due for 2024, but this is for the youngest part of the paediatric population, children of less than 2 years. For children first from 12 to 18, and then younger ones, immunogenicity data are requested and no large scale long duration clinical trial are requested. Immunogenicity studies are already in progress. This population could benefit from a vaccine before the end of 2021.

It could take more time for the youngest ones, but for the very young (newborn and less than 2), it is unsure a vaccine is needed.


More updates from the EMA

COVID-19 Vaccines Global Access (COVAX) updates

Survey: Access to vaccination for persons with disabilities

The European Disability Forum is carrying out a survey on access to vaccination for persons with disabilities to foster priority access to vaccination for persons with disabilities (with informed consent, accessible information, etc).

Fill in this quick Survey on Access to Vaccination for Persons with Disabilities now! It won't take more than five minutes.


Additional Resources

General factsheets

Explanatory materials on COVID-19 vaccines

Vaccination guidelines - Ensuring equitable access to vaccines

Vaccine deployment

National regulation and guidelines on COVID-19 vaccines in Europe



COVID-19 can cause persistent ill-health. Around a quarter of people who have had the virus experience symptoms that continue for at least a month but 1 in 10 are still unwell after 12 weeks. This has been described by patient groups as “Long COVID”.

The understanding is that these symptoms are caused by a persistence of the virus in some parts of the body that are sheltered from the immune system, such as the brain; direct damage to organs, such as the heart and lungs, and also the pancreas, causing some new cases of diabetes; and blood clotting, which can cause heart attacks and strokes. However, there is a huge variety in both the pattern of symptoms and their severity.

This is a condition that can be extremely debilitating. Those suffering from it describe a varying combination of overlapping symptoms. These symptoms include generalized pain, fatigue, shortness of breath, chest pain, muscle aches, palpitations, persisting high temperature and cognitive dysfunction. It can affect anyone, but women and health care workers seem to be at greater risk.

If you have experienced any of these symptoms, persisting after you have contracted COVID-19, please find below a list of patient organisations you can get in contact with.


The University of Birmingham launched on 18 February 2021 a major new £2.2m government-funded research project to improve the treatment, causes and symptoms of so-called ‘Long COVID’ in non-hospitalised patients.

The two- year project, funded through the National Institute for Health Research (NHIR) and UK Research and Innovation (UKRI), follows a UK-wide joint research call to fund ambitious and comprehensive Long COVID research.

At the heart of the study will be the use of a digital platform, called Atom5™ from med-tech company Aparito Limited, which will be configured for the study by experts from the University of Birmingham with patient input. Participating patients will be given access to the digital platform, allowing them to self-report symptoms, quality of life and work capability.

Click here to read more.

Upcoming Events:

  • Check back soon for more events!

Get involved:

Take the World Alliance of Pituitary Organizations' (WAPO) ACROCOVID II survey to help better understand how the pandemic is still impacting the acromegaly community. Available here in 6 different languages, it only takes 5-10 minutes! 



LongCOVID ACTS (Spain)

The Spanish collective of Long COVID sufferers.

Twitter page | Facebook page



Leben mit Corona (Switzerland)

Offers long-term sick people and their relatives support, information and help.

Website | Send an email

#ApresJ20 (France)

Information on Long COVID, specialised HCP , research and treatments.

Website | Send an email


Long COVID Kids (United Kingdom)

Advocacy group for kids with Long COVID.

Website | Twitter page | Facebook page

Post-COVID HUB (United Kingdom)

For people left with breathing difficulties after COVID-19, their family members, carers, healthcare professionals, policy-makers and researchers.


Patient led research for COVID-19 (United Kingdom)

A self-organized group of Long COVIDpatients working on patient-led research around the Long COVIDexperience.

Website | Send an email


Long COVID SOS (United Kingdom)

A campaign of COVID-19 long-term sufferers to put pressure on the government to recognise the needs of those with Long COVID and raise awareness.


COVID-19 support group (International)

The group consists of people from all over the world who have tested positive, are experiencing symptoms, or are recovering from COVID-19, including specific channels for Long COVID.



Additional Resources:


"EURORDIS cannot respond to questions concerning the medical aspects of a disease. EURORDIS does not employ qualified medical personnel or information specialists to give medical advice, diagnose illness, or offer referrals. We strongly recommend that you seek the advice of your health care provider with questions regarding medical care"


Below is a collection of written resources published by the European Commission, the European Court of Auditors, the World Health Organisation and the European Medicines Agency.

  1. European Commission

  2. European Court of Auditors

  3. World Health Organisation (WHO)

  4. European Medicines Agency (EMA)


European Commission

Read the latest updates from the European Commssion on their COVID-19 response webpage

Read other statements and publications from the European Commission:

More information



European Court of Auditors (ECA)

The EU’s initial contribution to the public health response to COVID-19


World Health Organisation (WHO)

Read the latest updates from the WHO on their Coronavirus Pandemic page

Read the WHO's past statements and publications:


European Medicines Agency (EMA)

Read the EMA's latest COVID-19 news alerts

Read past EMA statements and publications:

More information





Below is a collection of resources from national and local rare disease patient groups, European-level disease networks and federations, European Reference Networks and international groups who are members of EURORDIS.

  1. Information from national and local rare disease patient groups

  2. Information from European-level disease networks and federations

  3. Information from European Reference Networks

  4. Information from international groups

(EURORDIS Members*)


Information from national and local rare disease patient groups

Below is the information received from national and local rare disease patient groups on the latest COVID-19 developments.

More information








Czech Republic


France-Alliance Maladies Rares


Hong Kong















Information from European-level disease networks and federations

More information



Information from European Reference Networks

More information



Information from international groups

More information



Upcoming events

  • Check back soon for more events!


Past events

Below is an archive of recordings of events, held by a variety of organisations, on a variety of topics related to COVID-19.

  • EU matchmaking event on COVID-19 therapeutics. Apply online. (Deadline for applications 25 June). (July 12-13, 2021)
  • Webinar - WHO ‘The Role of Vaccines in Preventing Antimicrobial Resistance — WHO Perspectives and Country Experiences (Pakistan)’. Register now. (July 14, 2021 10:00 AM – 11:00 AM CEST, Online)
  • Webinar - Organon and European Parliamentary Forum for Sexual and Reproductive Rights ‘Learning the Lessons from COVID-19 for Women’s Health and Well-being’ event. Register. (June 17, 2021 4:00 PM – 5:30 PM CEST)Webinar - IndoUSrare: COVID-19 Vaccine Safety for Rare Disease Patients - Ask the Experts. Register. (June 23, 2021 2:00 PM – 3:00 PM BST)

  • Webinar - IndoUSrare: COVID-19 Vaccine Safety for Rare Disease Patients - Ask the Experts. Register. (June 23, 2021 2:00 PM – 3:00 PM BST)

  • Webinar - Join NORD's webinar 'Continuing the Conversation: FDA and CDC Leaders Discuss the COVID-19 Pandemic, Vaccines, and Special Considerations for the Rare Disease Community'. Register now. (June 16, 2021 8:00 PM - 9:00 PM CEST)
  • Webinar - BEAM Alliance ‘Antimicrobial Resistance in the era of COVID-19: Leveraging the Pharmaceutical Strategy to Prevent the next Pandemic’. Register. (June 16, 2021 3:30 PM – 6:00 PM CEST)

  • Webinar - European Patients’ Forum ‘Shot Callers Part 2: Continuing the Conversation on COVID-19 Vaccines, Variants and Veracity’ Register. (June 16, 2021 3:00 PM – 4:15 PM CET)
  • Webinar - UCL COVID-19 workshop on narratives of the virus. Register. (June 14, 2021 3:00 PM - 4:30 PM CEST)

  • Webinar - CEPS 'Vaccination emergency in Eastern Europe'. (June 9, 2021 2:00 PM – 3:30 PM CET, Online - Register

  • Webinar - Key Issues in COVID-19 Vaccines for PWBDs - Register now to learn about the latest WFH updates on COVID-19 vaccination for people with bleeding disorders (PWBD). (June 2, 2021 03:00 PM CEST)
  • Webinar - Alliance for Regenerative Medicine and PTC Therapeutics ‘Gene therapies for rare diseases — how to make this a success story in Europe?’ - Register (May 26, 2021 12:00 PM – 1:15 PM, Online)

  • Webinar - #AskTheExpert - EU citizens experience deep fatigue and frustration as pandemic enters second year: New survey findings from Living, working and COVID-19 - Register (18 May 2021, 11.00 – 12.00 CEST)

  • Webinar - The global challenge of vaccine access: the CEPI initiative - Register (17 May 2021, 14:30 CEST)

More information


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