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

EURORDIS COVID-19 statements

• Rare disease community calls for additional doses of COVID-19 vaccine to protect the most vulnerable and extra measures to vaccinate more European citizens (13 October 2021)

• 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

Italy's Certificate of Exemption on the vaccination

Italy has introduced a Certificate of Exemption for the COVID-19 vaccinations for people who cannot be vaccinated.

Vaccination exemption certificates already issued by the Regional Health Services are still valid until 30 November. The exemption certificate is in paper format, free of charge and does not contain the clinical reason for the exemption.

In particular, such a certificate could be used by people living with specific health conditions.

Is there a similar initiative in your country? Get in touch with us.

Additional Resources

General factsheets

• Covid factsheet from the European Lung Foundation

Long COVID

World Health Organisation definition of Long COVID:

Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms and that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time.

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.

Symptoms

Some of the most common symptoms include, but are not limited to; headaches, muscle and body aches, fatigue, difficulty breathing, difficulty concentrating, heart palpitations and persistent pain or pressure in the chest, amongst many others. 

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:

• Austria has set out recommendations for the treatment of people experiencing long COVID — which the health ministry estimates consists of around 10 to 14 percent of patients who have had acute COVID-19.
• 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 COVID-19 related events

October

'Working lunch: Improving vaccination uptake among patients with chronic conditions across Europe'

12 October 2021, 12.30pm – 3.00pm CEST

Chatham House ‘The COVID charter’ event

October 12, 2021 2:00pm – 3:00pm BST, online, more information

POLITICO ‘Evolution of Health Care series: Tackling mental health in the post-pandemic recovery’ event

14 October 2021, 9:00am – 10:00am, online, more information

European Commission seminar on the socio-economic challenges of the coronavirus pandemic

14 October 2021, 1:30pm, online, more information

WHO Access to COVID-19 Tools Accelerator Facilitation Council meeting 

15 October 2021, 12:30pm – 3:00pm, online, more information

November

Update on the COVID-19 pandemic in Europe with special focus on people living with a rare disease

6 November 2021, 2:00pm, Paris, more information