Please find below EURORDIS statements, sources of official information and information/activities organised in response to the pandemic which 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: eurordis@eurordis.org.
EURORDIS Response
- Rare disease community calls for additional doses of the 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)
- People living with a rare disease were severely impacted during the 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
EURORDIS has 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.
Vaccines
- European Vaccines Information Portal (EVIP) – Available in all EU languages
- COVID-19 Vaccines Global Access (COVAX)
List of authorised vaccines in the EU to prevent COVID-19
- Nuvaxovid, 20 December 2021
- 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
Additional Resources
- Covid factsheet from the European Lung Foundation
- “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
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
- 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)
- Overview of the implementation of COVID-19 vaccination strategies and vaccine deployment plans in the EU/EEA
Long COVID
The 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 that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, and 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.
Organisations:
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 SOS (United Kingdom)
A campaign for COVID-19 long-term sufferers to put pressure on the government to recognise the needs of those with Long COVID and raise awareness. Website
Long Covid Europe
A European network of Long COVID patient associations run by Long COVID patients, to offer unique expertise as a patient network and gather information concerning Long COVID to curate and share with stakeholders. Website
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. Website
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. Website
Patient-led research for COVID-19 (United Kingdom)
A self-organized group of Long COVID patients working on patient-led research around the Long COVID experience. Website | Send an email
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.