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

EURORDIS COVID-19 statements

• EURORDIS-Rare Diseases Europe urges governments across Europe and the world to make the third dose a priority for people with certain immune conditions (22 July 2021)

• EURORDIS-Rare Diseases Europe addresses the concerns of its members on the supply of COVID-19 vaccines and other medicinal products (11 June 2021)

• EURORDIS-Rare Diseases Europe calls for more equitable access to COVID-19 vaccines for vulnerable populations in Europe and worldwide (23 April 2021)

• EURORDIS' comments on the EMA Public stakeholder meetings - "Putting the COVID-19 vaccines in context for people with rare diseases" (January 2021)

• Science should take precedent, not politics: the COVID-19 vaccine assessment process (8 December 2020)

• 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 2020)

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.

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

More updates from the EMA

• First COVID-19 vaccine approved for children aged 12 to 15 in EU

• Vaxzevria (AstraZeneka): further advice on blood clots and low blood platelets

• Treatments and vaccines for COVID-19: authorised medicines

• COVID-19 vaccines: development, evaluation, approval and monitoring

• EMA starts rolling review of CureVac’s COVID-19 vaccine (CVnCoV) (12 February 2021)

• Clarification on Sputnik V vaccine in the EU approval process (10 February 2021)

• EMA COVID-19 assessments ‘OPEN’ to non-EU regulators (04 February 2021)

COVID-19 Vaccines Global Access (COVAX) updates

• Latest news

Additional Resources

General factsheets

• Covid factsheet from the European Lung Foundation

Explanatory materials on COVID-19 vaccines

• “Let’s Talk About Vaccination”  EPF Patient Guide

• The Science of COVID-19 Vaccines and Monoclonal Antibodies (COVID-19 Prevention Network)

• Shot Callers: A Virtual Event on COVID-19 Vaccines

• Visual materials on mRNA and viral vector vaccines: Viral vector vaccines (infographic, available in all EU languages, and social media carousel) and mRNA vaccines (infographic, available in all EU languages, social media carousel and videos)

Vaccination guidelines - Ensuring equitable access to vaccines

• Connect4children's Podcast: The how and why of COVID-19 vaccines for children

• European Cancer Patient Coalition's vaccination guidelines for cancer patients

• Disability considerations for COVID-19 vaccination: WHO and UNICEF policy brief

• The recommendations of all ERNs on both priorities and contra-indications for vaccination for people living with rare diseases

• Coalition for Vaccination : a manifesto to encourage healthcare professionals to get vaccinated against COVID-19 

• The recommendations of the ERN-Skin thematic groups for the COVID-19 vaccination of patients with rare skin diseases

Vaccine deployment

• ALAN Maladies Rares Luxembourg Enquête sur la vaccination COVID-19 des personnes avec maladies rares (in French)

• Pro Rare Austria: Information on Vaccines for People with Rare Diseases (in German)

• The differences in vaccination campaigns in Europe (presentation)

• Global civil society is calling for urgent action from governments, donors, companies and multilateral agencies for the equitable rollout of #COVID19 Vaccines

• RaDiOrg article on priority vaccines for persons living with a rare disease

• Overview of the implementation of COVID-19 vaccination strategies and vaccine deployment plans in the EU/EEA

National regulation and guidelines on COVID-19 vaccines in Europe

• Expanding access priorities for Covid-19 vaccination - Elargissement des priorités d’accès à la vaccination antiCovid-19 (France)

• Covid-19 vaccine: a 3rd injection recommended for immunocompromised people - Vaccin contre la Covid-19 : une 3e injection recommandée pour les personnes immunodéprimées (Assurance maladie en France)

Long COVID

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.

Organisations:

Additional Resources:

• Post-acute COVID-19 syndrome - Nature Medicine journal
• Primary Care Practical Guide for Patients with LONG COVID-19 - Spanish Society of General and Family Doctors (SEMG)
• The Guardian - Article 'Long Covid symptoms ease after vaccination'

"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.

• European Commission - COVID-19 response webpage

1. THE ORGANISATION OF RESILIENT HEALTH AND SOCIAL CARE FOLLOWING THE COVID-19 PANDEMIC
2.  COVID-19 Health System Response Monitor - examining health system responses to COVID-19
3. The scientific, technological and societal conditions for the end of the COVID-19 crisis
4. Guidance on the management of clinical trials during the COVID-19 (coronavirus) pandemic (04 February 2021)
5. EU CCP Database - Covid-19 convalescent plasma collection and transfusion in the EU

• European Court of Auditors (ECA) - The EU’s initial contribution to the public health response to COVID-19

• World Health Organisation (WHO) - Coronavirus Pandemic page

• European Medicines Agency (EMA) - Read the EMA's latest COVID-19 news alerts

• EUROFOUND - Eurofound - COVID-19 webpage

1. Living, working and COVID-19 (Update April 2021): Mental health and trust decline across EU as pandemic enters another year
2. COVID-19: Implications for employment and working life

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.

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.

Information from European-level disease networks and federations

• ESC (European Society of Cardiology) - Q&A for COVID-19 and Heart Patients

• Myeloma Patients Europe - Information on Coronavirus and Myeloma

• European Paediatric Neurology Society - COVID-19 and neurological disorders

• European Patients Forum - COVID-19 Resource Point

Information from European Reference Networks

• MetabERN - Recommendations for all Rare Inherited Metabolic Diseases patients andcaregivers about treatment adherence during the COVID-19 emergency

• ERN ITHACA - General advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders

• EuroBloodNet (ERN for rare hematological diseases) - COVID-19 information

• MetabERN - Recommendations for all rare inherited metabolic diseases patients and caregivers about treatment adherence during the COVID-19 emergency

Information from international groups

• CML Advocates Network - Chronic Myeloid Leukemia (CML) and COVID-19

• Congenital Hyperinsulin International- COVID-19 Information for the HI Community

• 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 Brain Tumour Alliance - COVID-19 information for the international brain tumour community

• International Federation for Spina Bifida and Hydrocephalus (IFSBH) - COVID-19 resources

• International Disability Alliance - Key Recommendations toward a disability-inclusive COVID-19 response

• Rare Diseases International - COVID-19 resources centre

• Thalassaemia International Federation - The COVID-19 pandemic and haemoglobin disorders

• World CDG Organization - FAQ about COVID-19 and CDG (Congenital Disorders of Glycosilation)

• World Duchenne Organization - Daily updates on COVID-19 and Duchenne & Becker muscular dystrophy

Upcoming events

• Building the European Health Union together - for better public health in Europe (8 September 2021, 14:00-15:00 CET)
• EFPIA ‘Health Systems after COVID-19 — how can the industry contribute to strengthened resilience?' (September 24 2021, 9:00am – 10:30am CEST)
• 'Working lunch: Improving vaccination uptake among patients with chronic conditions across Europe' (12 October 2021, 12.30pm – 3.00pm CEST)