🕷️ Crawler Inspector

URL Lookup

Direct Parameter Lookup

Raw Queries and Responses

1. Shard Calculation

Query:

Response:

Calculated Shard: 111 (from laksa126)

2. Crawled Status Check

Query:

curl -X POST \
  'http://laksa111.int.ahrefs:8124/' \
  -H 'Content-Type: text/plain' \
  -H 'X-ClickHouse-Database: crawler3' \
  -H 'Authorization: Basic YXBpOg==' \
  -d 'SELECT getAhrefsURLFromUnparsed(src_unparsed) AS found_url, ifNull(toUnixTimestamp(download_stamp), 0) AS crawl_time, ifNull(toUnixTimestamp(props_url_first_seen), 0) AS first_indexed_time, download_http_code AS http_code, src_unparsed AS src_unparsed, src_root_hash AS src_root_hash, history_drop_reason AS history_drop_reason, meta_title AS meta_title, meta_descriptions AS meta_descriptions, attrs_boilerpipe_text AS attrs_boilerpipe_text, attrs_markdown AS attrs_markdown, attrs_readable_markdown AS attrs_readable_markdown, meta_canonical AS meta_canonical FROM crawler3.page_info_local FINAL PREWHERE (src_root_hash, src_unparsed) IN ((getAhrefsRootHashFromUnparsed(getAhrefsUnparsedNoserviceFromURL(\'https://www.eurordis.org/covid-19-information-resource-centre/\')), getAhrefsUnparsedNoserviceFromURL(\'https://www.eurordis.org/covid-19-information-resource-centre/\'))) FORMAT JSONEachRow'

Response:

{"found_url":"https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/","crawl_time":1754948719,"first_indexed_time":1679038001,"http_code":200,"src_unparsed":"org,eurordis!www,\/covid-19-information-resource-centre\/ s443","src_root_hash":"18201035397694961111","history_drop_reason":null,"meta_title":"COVID-19 Information Resource Centre - EURORDIS-Rare Diseases Europe","meta_descriptions":[""],"attrs_boilerpipe_text":"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","attrs_markdown":"Manage Cookie Consent\n\nTo provide the best experiences, we use technologies like cookies to store and\/or access device information. Consenting to these technologies will allow us to process data such as browsing behavior or unique IDs on this site. Not consenting or withdrawing consent, may adversely affect certain features and functions.\n\nFunctional\n\nFunctional\n\nAlways active\n\nThe technical storage or access is strictly necessary for the legitimate purpose of enabling the use of a specific service explicitly requested by the subscriber or user, or for the sole purpose of carrying out the transmission of a communication over an electronic communications network.\n\nPreferences\n\nPreferences\n\nThe technical storage or access is necessary for the legitimate purpose of storing preferences that are not requested by the subscriber or user.\n\nStatistics\n\nStatistics\n\nThe technical storage or access that is used exclusively for statistical purposes. The technical storage or access that is used exclusively for anonymous statistical purposes. Without a subpoena, voluntary compliance on the part of your Internet Service Provider, or additional records from a third party, information stored or retrieved for this purpose alone cannot usually be used to identify you.\n\nMarketing\n\nMarketing\n\nThe technical storage or access is required to create user profiles to send advertising, or to track the user on a website or across several websites for similar marketing purposes.\n\n[Manage options](https:\/\/www.eurordis.org\/cookie-policy-eu\/#cmplz-manage-consent-container) [Manage services](https:\/\/www.eurordis.org\/cookie-policy-eu\/#cmplz-cookies-overview) [Manage {vendor\\_count} vendors](https:\/\/www.eurordis.org\/cookie-policy-eu\/#cmplz-tcf-wrapper) [Read more about these purposes](https:\/\/cookiedatabase.org\/tcf\/purposes\/)\n\nAccept\n\nDeny\n\nView preferences\n\nSave preferences\n\n[View preferences](https:\/\/www.eurordis.org\/cookie-policy-eu\/#cmplz-manage-consent-container)\n\n[Cookie Policy](https:\/\/www.eurordis.org\/cookie-policy-eu\/) [{title}](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/) [{title}](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n\n[Skip to content](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/#maincontent)\n\n- [Accessibility Options](https:\/\/www.eurordis.org\/accessibility-options\/)\n\n- [Newsroom](https:\/\/www.eurordis.org\/category\/newsroom\/)\n- [Multimedia](https:\/\/www.eurordis.org\/multimedia\/)\n- [Events](https:\/\/www.eurordis.org\/category\/events\/)\n- [Members](https:\/\/www.eurordis.org\/who-we-are\/our-members\/)\n- [Resources](https:\/\/www.eurordis.org\/resources\/)\n- [Contact us](https:\/\/www.eurordis.org\/contact-us\/)\n- Search\n\n[![Eurordis logo](https:\/\/www.eurordis.org\/wp-content\/themes\/eurordis\/main\/img\/layout\/eurordis-logo.png)](https:\/\/www.eurordis.org\/)\n\n# Eurordis - Rare Disease Europe\n\n- [Who We Are](https:\/\/www.eurordis.org\/our-vision-mission)\n- [What We Do](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n- [Information & Support](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n- [Get Involved](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n- [Donate](https:\/\/www.eurordis.org\/donate\/)\n\nAbout Us\n\n- [About EURORDIS](https:\/\/www.eurordis.org\/who-we-are\/our-vision-mission\/)\n\n- [History](https:\/\/www.eurordis.org\/who-we-are\/our-history\/)\n\n- [Team](https:\/\/www.eurordis.org\/who-we-are\/staff\/)\n\n- [Initiatives](https:\/\/www.eurordis.org\/who-we-are\/initiatives-programmes\/)\n\n- [Projects & Partnerships](https:\/\/www.eurordis.org\/who-we-are\/projects-and-partnerships\/)\n\nOur Governance\n\n- [Governance Charts & External Representation](https:\/\/www.eurordis.org\/external-representation\/)\n\n- [Board of Directors](https:\/\/www.eurordis.org\/who-we-are\/board-of-directors\/)\n\n- [Strategy & Impact](https:\/\/www.eurordis.org\/who-we-are\/our-strategy-impact\/)\n\n- [Funding](https:\/\/www.eurordis.org\/who-we-are\/our-funding\/)\n\n- [Annual Reports, Statutes & By-Laws](https:\/\/www.eurordis.org\/who-we-are\/annual-reports-work-programmes-statutes-and-by-laws\/)\n\nOur Network\n\n- [Members](https:\/\/www.eurordis.org\/who-we-are\/our-members\/)\n\n- [National Alliances](https:\/\/www.eurordis.org\/who-we-are\/our-members\/national-alliances-for-rare-diseases\/)\n\n- [European Federations](https:\/\/www.eurordis.org\/who-we-are\/our-members\/european-or-international-federations-for-rare-diseases\/)\n\n- [Volunteers](https:\/\/www.eurordis.org\/who-we-are\/volunteers\/)\n\nRare Disease Policy\n\n- [Setting the Agenda](https:\/\/www.eurordis.org\/rare-disease-policy\/)\n\n- [Mobilising Policymakers](https:\/\/www.eurordis.org\/rare-disease-policy\/mobilising-policymakers\/)\n\n- [Engaging the Community](https:\/\/www.eurordis.org\/rare-disease-policy\/engaging-the-community\/)\n\n- [European Elections 2024](https:\/\/www.eurordis.org\/actrare2024\/)\n\n- [European Action Plan](https:\/\/www.eurordis.org\/rare-disease-policy\/30-million-reasons\/)\n\nPriority Areas\n\n- [Diagnosis](https:\/\/www.eurordis.org\/our-priorities\/diagnosis\/)\n\n- [Research](https:\/\/www.eurordis.org\/our-priorities\/research\/)\n\n- [Holistic Care](https:\/\/www.eurordis.org\/our-priorities\/holistic-care\/)\n\n- [Treatments](https:\/\/www.eurordis.org\/our-priorities\/treatments\/)\n\n- [Data and Digital Health](https:\/\/www.eurordis.org\/our-priorities\/data-and-digital-health\/)\n\nCross-cutting Areas\n\n- [Mental Health & Wellbeing](https:\/\/www.eurordis.org\/mental-wellbeing\/)\n\n- [Newborn Screening](https:\/\/www.eurordis.org\/our-priorities\/diagnosis\/newborn-screening\/)\n\n- [European Reference Networks](https:\/\/www.eurordis.org\/our-priorities\/european-reference-networks\/)\n\n- [Rare Cancers](https:\/\/www.eurordis.org\/our-priorities\/rare-cancers\/)\n\n- [Integrated Care](https:\/\/www.eurordis.org\/our-priorities\/integrated-care\/)\n\nAbout Rare Diseases\n\n- [What is a Rare Disease?](https:\/\/www.eurordis.org\/information-support\/what-is-a-rare-disease\/)\n\n- [Information on your Rare Disease](https:\/\/www.eurordis.org\/information-support\/on-your-disease\/)\n\n- [Rare Diseases in the Arts](https:\/\/www.eurordis.org\/information-support\/rare-diseases-in-the-arts\/)\n\n- [Personal Stories](https:\/\/www.eurordis.org\/rare-disease-personal-stories\/)\n\n- [Survey Design Toolkit for Patient Organisations](https:\/\/www.eurordis.org\/survey-design-toolkit\/)\n\nAbout Medicines For Rare Diseases\n\n- [FAQ: Rare Disease Medicines](https:\/\/www.eurordis.org\/information-support\/find-information-on-treatments\/)\n\n- [List of the Marketing Authorisations](https:\/\/www.eurordis.org\/information-support\/list-of-the-marketing-authorisations\/)\n\n- [Getting Involved in Medicine Development](https:\/\/www.eurordis.org\/information-support\/find-information-on-treatments\/#patient-engagement)\n\nFind Support\n\n- [Connect with a Patient Organisation](https:\/\/www.eurordis.org\/information-support\/find-a-patient-organisation\/)\n\n- [Contact Rare Disease Helplines](https:\/\/www.eurordis.org\/information-support\/rare-disease-help-lines\/)\n\n- [Find Medical Expertise](https:\/\/www.eurordis.org\/information-support\/find-medical-expertise\/)\n\nWith EURORDIS\n\n- [Become a Member](https:\/\/www.eurordis.org\/get-involved\/become-a-member\/)\n\n- [Become an ePAG Advocate](https:\/\/www.eurordis.org\/our-priorities\/european-reference-networks\/epag\/)\n\n- [Join the EURORDIS Round Table of Companies](https:\/\/www.eurordis.org\/get-involved\/join-the-eurordis-round-table-of-companies\/)\n\n- [Support EURORDIS](https:\/\/www.eurordis.org\/support-eurordis\/)\n\n- [Careers](https:\/\/www.eurordis.org\/get-involved\/jobs\/)\n\nJoin Our Activities\n\n- [EURORDIS Open Academy](https:\/\/openacademy.eurordis.org\/)\n\n- [Rare Disease Week](https:\/\/www.eurordis.org\/rare-disease-policy\/european-policy\/brussels-rare-disease-week\/)\n\n- [Rare Barometer](https:\/\/www.eurordis.org\/rare-barometer\/english\/)\n\n- [Rare Disease Day](https:\/\/www.rarediseaseday.org\/)\n\n[Attend Our Events](https:\/\/www.eurordis.org\/category\/events\/)\n\n- [Black Pearl Awards](https:\/\/www.eurordis.org\/black-pearl-awards\/)\n\n- [European Conference on Rare Diseases (ECRD)](https:\/\/www.rare-diseases.eu\/)\n\n- [Membership Meeting](https:\/\/www.eurordis.org\/who-we-are\/our-members\/eurordis-membership-meeting\/)\n\nSearch\n\n- [Who We Are](https:\/\/www.eurordis.org\/our-vision-mission)\n  - [About Us](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [About EURORDIS](https:\/\/www.eurordis.org\/who-we-are\/our-vision-mission\/)\n  - [History](https:\/\/www.eurordis.org\/who-we-are\/our-history\/)\n  - [Team](https:\/\/www.eurordis.org\/who-we-are\/staff\/)\n  - [Initiatives](https:\/\/www.eurordis.org\/who-we-are\/initiatives-programmes\/)\n  - [Projects & Partnerships](https:\/\/www.eurordis.org\/who-we-are\/projects-and-partnerships\/)\n  - [Our Governance](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [Governance Charts & External Representation](https:\/\/www.eurordis.org\/external-representation\/)\n  - [Board of Directors](https:\/\/www.eurordis.org\/who-we-are\/board-of-directors\/)\n  - [Strategy & Impact](https:\/\/www.eurordis.org\/who-we-are\/our-strategy-impact\/)\n  - [Funding](https:\/\/www.eurordis.org\/who-we-are\/our-funding\/)\n  - [Annual Reports, Statutes & By-Laws](https:\/\/www.eurordis.org\/who-we-are\/annual-reports-work-programmes-statutes-and-by-laws\/)\n  - [Our Network](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [Members](https:\/\/www.eurordis.org\/who-we-are\/our-members\/)\n  - [National Alliances](https:\/\/www.eurordis.org\/who-we-are\/our-members\/national-alliances-for-rare-diseases\/)\n  - [European Federations](https:\/\/www.eurordis.org\/who-we-are\/our-members\/european-or-international-federations-for-rare-diseases\/)\n  - [Volunteers](https:\/\/www.eurordis.org\/who-we-are\/volunteers\/)\n- [What We Do](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [Rare Disease Policy](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [Setting the Agenda](https:\/\/www.eurordis.org\/rare-disease-policy\/)\n  - [Mobilising Policymakers](https:\/\/www.eurordis.org\/rare-disease-policy\/mobilising-policymakers\/)\n  - [Engaging the Community](https:\/\/www.eurordis.org\/rare-disease-policy\/engaging-the-community\/)\n  - [European Elections 2024](https:\/\/www.eurordis.org\/actrare2024\/)\n  - [European Action Plan](https:\/\/www.eurordis.org\/rare-disease-policy\/30-million-reasons\/)\n  - [Priority Areas](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [Diagnosis](https:\/\/www.eurordis.org\/our-priorities\/diagnosis\/)\n  - [Research](https:\/\/www.eurordis.org\/our-priorities\/research\/)\n  - [Holistic Care](https:\/\/www.eurordis.org\/our-priorities\/holistic-care\/)\n  - [Treatments](https:\/\/www.eurordis.org\/our-priorities\/treatments\/)\n  - [Data and Digital Health](https:\/\/www.eurordis.org\/our-priorities\/data-and-digital-health\/)\n  - [Cross-cutting Areas](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [Mental Health & Wellbeing](https:\/\/www.eurordis.org\/mental-wellbeing\/)\n  - [Newborn Screening](https:\/\/www.eurordis.org\/our-priorities\/diagnosis\/newborn-screening\/)\n  - [European Reference Networks](https:\/\/www.eurordis.org\/our-priorities\/european-reference-networks\/)\n  - [Rare Cancers](https:\/\/www.eurordis.org\/our-priorities\/rare-cancers\/)\n  - [Integrated Care](https:\/\/www.eurordis.org\/our-priorities\/integrated-care\/)\n- [Information & Support](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [About Rare Diseases](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [What is a Rare Disease?](https:\/\/www.eurordis.org\/information-support\/what-is-a-rare-disease\/)\n  - [Information on your Rare Disease](https:\/\/www.eurordis.org\/information-support\/on-your-disease\/)\n  - [Rare Diseases in the Arts](https:\/\/www.eurordis.org\/information-support\/rare-diseases-in-the-arts\/)\n  - [Personal Stories](https:\/\/www.eurordis.org\/rare-disease-personal-stories\/)\n  - [Survey Design Toolkit for Patient Organisations](https:\/\/www.eurordis.org\/survey-design-toolkit\/)\n  - [About Medicines For Rare Diseases](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [FAQ: Rare Disease Medicines](https:\/\/www.eurordis.org\/information-support\/find-information-on-treatments\/)\n  - [List of the Marketing Authorisations](https:\/\/www.eurordis.org\/information-support\/list-of-the-marketing-authorisations\/)\n  - [Getting Involved in Medicine Development](https:\/\/www.eurordis.org\/information-support\/find-information-on-treatments\/#patient-engagement)\n  - [Find Support](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [Connect with a Patient Organisation](https:\/\/www.eurordis.org\/information-support\/find-a-patient-organisation\/)\n  - [Contact Rare Disease Helplines](https:\/\/www.eurordis.org\/information-support\/rare-disease-help-lines\/)\n  - [Find Medical Expertise](https:\/\/www.eurordis.org\/information-support\/find-medical-expertise\/)\n- [Get Involved](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [With EURORDIS](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [Become a Member](https:\/\/www.eurordis.org\/get-involved\/become-a-member\/)\n  - [Become an ePAG Advocate](https:\/\/www.eurordis.org\/our-priorities\/european-reference-networks\/epag\/)\n  - [Join the EURORDIS Round Table of Companies](https:\/\/www.eurordis.org\/get-involved\/join-the-eurordis-round-table-of-companies\/)\n  - [Support EURORDIS](https:\/\/www.eurordis.org\/support-eurordis\/)\n  - [Careers](https:\/\/www.eurordis.org\/get-involved\/jobs\/)\n  - [Join Our Activities](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/)\n  - [EURORDIS Open Academy](https:\/\/openacademy.eurordis.org\/)\n  - [Rare Disease Week](https:\/\/www.eurordis.org\/rare-disease-policy\/european-policy\/brussels-rare-disease-week\/)\n  - [Rare Barometer](https:\/\/www.eurordis.org\/rare-barometer\/english\/)\n  - [Rare Disease Day](https:\/\/www.rarediseaseday.org\/)\n  - [Attend Our Events](https:\/\/www.eurordis.org\/category\/events\/)\n  - [Black Pearl Awards](https:\/\/www.eurordis.org\/black-pearl-awards\/)\n  - [European Conference on Rare Diseases (ECRD)](https:\/\/www.rare-diseases.eu\/)\n  - [Membership Meeting](https:\/\/www.eurordis.org\/who-we-are\/our-members\/eurordis-membership-meeting\/)\n\n[Newsroom](https:\/\/www.eurordis.org\/category\/newsroom\/ \"Newsroom\")\n\n[Multimedia](https:\/\/www.eurordis.org\/multimedia\/ \"Multimedia\")\n\n[Events](https:\/\/www.eurordis.org\/category\/events\/ \"Events\")\n\n[Members](https:\/\/www.eurordis.org\/who-we-are\/our-members\/ \"Members\")\n\n[Resources](https:\/\/www.eurordis.org\/resources\/ \"Resources\")\n\n[Contact us](https:\/\/www.eurordis.org\/contact-us\/ \"Contact us\")\n\n[Accessibility Options](https:\/\/www.eurordis.org\/accessibility-options\/ \"Accessibility Options\")\n\n[Donate](https:\/\/www.eurordis.org\/donate\/)\n\n[Home](https:\/\/www.eurordis.org\/ \"Go to EURORDIS-Rare Diseases Europe.\")\n\n\\\\\n\nCOVID-19 Information Resource Centre\n## COVID-19 Information Resource Centre\n![](https:\/\/www.eurordis.org\/wp-content\/uploads\/2022\/12\/COVID-19-website-banner-1024x213.jpg)\n\n**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.**\n\nIf 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](https:\/\/web.archive.org\/web\/20220704212556\/mailto:eurordis@eurordis.org).\n\n## EURORDIS Response\n- [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](https:\/\/www.eurordis.org\/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)\n- [EURORDIS-Rare Diseases Europe urges governments across Europe and the world to make the third dose a priority for people with certain immune conditions](https:\/\/www.eurordis.org\/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)\n- [EURORDIS-Rare Diseases Europe addresses the concerns of its members on the supply of COVID-19 vaccines and other medicinal products](https:\/\/www.eurordis.org\/eurordis-rare-diseases-europe-addresses-the-concerns-of-its-members-on-the-supply-of-covid-19-vaccines-and-other-medicinal-products\/) (11 June 2021)\n- [EURORDIS-Rare Diseases Europe calls for more equitable access to COVID-19 vaccines for vulnerable populations in Europe and worldwide](https:\/\/www.eurordis.org\/eurordis-rare-diseases-europe-calls-for-more-equitable-access-to-covid-19-vaccines-for-vulnerable-populations-in-europe-and-worldwide\/) (23 April 2021)\n- EURORDIS’ comments on the EMA Public stakeholder meetings – “[Putting the COVID-19 vaccines in context for people with rare diseases](https:\/\/www.eurordis.org\/putting-the-covid-19-vaccines-in-context-for-people-with-rare-diseases\/)” (January 2021)\n- [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](http:\/\/download2.eurordis.org\/rbv\/covid19survey\/PressRelease_COVID19surveyresults_Final2.pdf) (11 November 2020)\n\n![](https:\/\/www.eurordis.org\/wp-content\/uploads\/2023\/02\/covid-09_generated-1024x1024.jpg)\n### EURORDIS Rare Barometer survey on COVID-19\nEURORDIS 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.\n\n- **See the [final results](https:\/\/www.eurordis.org\/publications\/how-has-covid-19-impacted-people-with-rare-diseases\/) of the survey in Europe.**\n## Vaccines\n- [European Vaccines Information Portal](https:\/\/vaccination-info.eu\/en) (EVIP) – Available in all EU languages\n- [COVID-19 Vaccines Global Access](https:\/\/www.gavi.org\/covax-facility) (COVAX)\n### List of [authorised vaccines](https:\/\/www.ema.europa.eu\/en\/human-regulatory\/overview\/public-health-threats\/coronavirus-disease-covid-19\/treatments-vaccines-covid-19) in the EU to prevent COVID-19\n- [Nuvaxovid](https:\/\/www.ema.europa.eu\/en\/medicines\/human\/EPAR\/nuvaxovid), 20 December 2021\n- [Janssen](https:\/\/www.ema.europa.eu\/en\/medicines\/human\/EPAR\/covid-19-vaccine-janssen) (also known as the Johnson & Johnson COVID-19 vaccine), 11 March 2021\n- [Vaxzevria](https:\/\/www.ema.europa.eu\/en\/medicines\/human\/summaries-opinion\/covid-19-vaccine-astrazeneca) (also known as the AstraZeneca COVID-19 vaccine), 29 January 2021\n- [Moderna](https:\/\/www.ema.europa.eu\/en\/medicines\/human\/EPAR\/covid-19-vaccine-moderna), 6 January 2021\n- [Comirnaty](http:\/\/www.ema.europa.eu\/en\/medicines\/human\/EPAR\/comirnaty) (also known as the Pfizer-BioNTech COVID-19 vaccine), 21 December 2020\n### Additional Resources\n- [Covid factsheet from the European Lung Foundation](https:\/\/europeanlung.org\/en\/information-hub\/factsheets\/covid-19-factsheet\/)\n- [“Let’s Talk About Vaccination” EPF Patient Guide](https:\/\/www.eu-patient.eu\/globalassets\/library\/publications\/lets-talk-about-vaccination_final2021-double.pdf)\n- [The Science of COVID-19 Vaccines](https:\/\/coronaviruspreventionnetwork.org\/coronavirus-vaccine-and-antibody-science\/) and Monoclonal Antibodies (COVID-19 Prevention Network)\n- [Shot Callers](https:\/\/www.youtube.com\/watch?reload=9&v=t3IcbF0579M&feature=youtu.be): A Virtual Event on COVID-19 Vaccines\n- Visual materials on [mRNA](https:\/\/www.consilium.europa.eu\/en\/infographics\/covid-19-mrna-vaccine\/) and [viral vector vaccines](https:\/\/www.consilium.europa.eu\/en\/infographics\/covid-19-viral-vector-vaccines\/)\n\n**Vaccination guidelines – Ensuring equitable access to vaccines**\n\n- [Connect4children’s Podcast: The how and why of COVID-19 vaccines for children](https:\/\/www.buzzsprout.com\/1756930\/8376771)\n- [European Cancer Patient Coalition’s vaccination guidelines for cancer patients](https:\/\/ecpc.org\/covid-19-information\/#vaccination-guidelines)\n- [Disability considerations for COVID-19 vaccination: WHO and UNICEF policy brief](https:\/\/www.who.int\/publications\/i\/item\/who-2019-ncov-vaccination-and-disability-policy-brief-2021.1)\n- The [recommendations of ***all*** ERNs on both priorities and contra-indications for vaccination](http:\/\/download2.eurordis.org\/documents\/pdf\/20210205_summary_ERN_COVID-19_Vaccination_DEF.pdf) for people living with rare diseases\n- The [recommendations](https:\/\/ern-skin.eu\/vaccination-advices\/) of the ERN-Skin thematic groups for the COVID-19 vaccination of patients with rare skin diseases\n\n**Vaccine deployment**\n\n- [ALAN Maladies Rares Luxembourg Enquête sur la vaccination COVID-19 des personnes avec maladies rares](https:\/\/alan.lu\/wp-content\/uploads\/2021\/06\/Rapport-vaccination-final-1.pdf) (in French)\n- [Pro Rare Austria: Information on Vaccines for People with Rare Diseases](https:\/\/www.prorare-austria.org\/newsroom\/aktuelles\/news\/covid-19-impfung-informationen-und-stellungnahme-von-pro-rare-austria-1\/) (in German)\n- [Overview of the implementation of COVID-19 vaccination strategies and vaccine deployment plans in the EU\/EEA](https:\/\/www.ecdc.europa.eu\/sites\/default\/files\/documents\/Overview-of-COVID-19-vaccination-strategies-deployment-plans-in-the-EU-EEA.pdf)\n## Long COVID\n*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.*\n\n![](https:\/\/www.eurordis.org\/wp-content\/uploads\/2023\/02\/vecteezy_long-term-effects-of-covid-19-of-post-covid-19-syndrome_10462238-1024x1024.jpg)\n### Organisations:\n##### ****LongCOVID ACTS (Spain)****\nThe Spanish collective of Long COVID sufferers. [Twitter page](https:\/\/twitter.com\/longcovidspain) \\| [Facebook page](https:\/\/web.archive.org\/web\/20220704212556\/https:\/\/www.facebook.com\/groups\/256612158996233\/)\n\n##### ****Leben mit Corona (Switzerland)****\nOffers long-term sick people and their relatives support, information and help. [Website](https:\/\/leben-mit-corona.ch\/) \\| [Send an email](http:\/\/leben-mit-corona.ch\/)\n\n##### ****\\#ApresJ20 (France)****\nInformation on Long COVID, specialised HCP, research and treatments. [Website](https:\/\/www.apresj20.fr\/) \\| [Send an email](http:\/\/apresj20.fr\/)\n\n##### ******Long COVID SOS (United Kingdom)******\nA 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](https:\/\/www.longcovidsos.org\/)\n\n##### ****Long Covid Europe****\nA 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](https:\/\/longcovideurope.org\/?fbclid=IwAR0w3-9sCL0eE7xn-aMYNNtZra1yFFbP4Jj6BtYBx6H-gS4UeHqviDPTkAY)\n\n##### ******COVID-19 support group (International)******\nThe 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](https:\/\/www.wearebodypolitic.com\/covid19)\n\n##### ******Long COVID Kids (United Kingdom)******\nAdvocacy group for kids with Long COVID. [Website](https:\/\/www.longcovidkids.org\/) [\\|](https:\/\/web.archive.org\/web\/20220704212556\/https:\/\/www.longcovidkids.org\/) [Twitter page](https:\/\/twitter.com\/LongCovidKids) \\| [Facebook page](https:\/\/web.archive.org\/web\/20220704212556\/https:\/\/www.facebook.com\/longcovidkids)\n\n##### ******Post-COVID HUB (United Kingdom)******\nFor people left with breathing difficulties after COVID-19, their family members, carers, healthcare professionals, policy-makers and researchers. [Website](https:\/\/www.post-covid.org.uk\/)\n\n##### ******Pat**ient-led **research for COVID-19 (United Kingdom)******\nA self-organized group of Long COVID patients working on patient-led research around the Long COVID experience. [Website](https:\/\/patientresearchcovid19.com\/) \\| [Send an email](http:\/\/patientresearchcovid19.com\/)\n\n*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*.\n\n***\n- [Official Sources](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/#XwYXLR3nNKV1)\n- [Other Resources](https:\/\/www.eurordis.org\/covid-19-information-resource-centre\/#XwYXLR3nNKV2)\n\n## Official Sources\n***\n**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.**\n\n- **European Commission –** [COVID-19 response webpage](http:\/\/ec.europa.eu\/info\/live-work-travel-eu\/health\/coronavirus-response_en)\n\n1. [THE ORGANISATION OF RESILIENT HEALTH AND SOCIAL CARE FOLLOWING THE COVID-19 PANDEMIC](https:\/\/ec.europa.eu\/health\/sites\/health\/files\/expert_panel\/docs\/026_health_socialcare_covid19_en.pdf)\n2. [COVID-19 Health System Response Monitor](http:\/\/www.covid19healthsystem.org\/mainpage.aspx) – examining health system responses to COVID-19\n3. [The scientific, technological and societal conditions for the end of the COVID-19 crisis](hhttps:\/\/op.europa.eu\/en\/publication-detail\/-\/publication\/cbd15185-bdcd-11eb-8aca-01aa75ed71a1\/language-en)\n4. [Guidance on the management of clinical trials during the COVID-19 (coronavirus) pandemic](http:\/\/ec.europa.eu\/health\/sites\/health\/files\/files\/eudralex\/vol-10\/guidanceclinicaltrials_covid19_en.pdf?utm_source=POLITICO.EU&utm_campaign=bc6c97e2e3-EMAIL_CAMPAIGN_2020_04_28_12_07&utm_medium=email&utm_term=0_10959edeb5-bc6c97e2e3-190044093) (04 February 2021)\n5. [EU CCP Database – Covid-19 convalescent plasma collection and transfusion in the EU](http:\/\/ec.europa.eu\/health\/blood_tissues_organs\/covid-19_en)\n\n- **European Court of Auditors (ECA) –** [The EU’s initial contribution to the public health response to COVID-19](https:\/\/www.eca.europa.eu\/en\/Pages\/DocItem.aspx?did=57722)\n- **World Health Organisation (WHO)** – [Coronavirus Pandemic page](https:\/\/www.who.int\/emergencies\/diseases\/novel-coronavirus-2019)\n- **European Medicines Agency (EMA) –** Read the EMA’s [latest COVID-19 news alerts](http:\/\/www.ema.europa.eu\/en\/human-regulatory\/overview\/public-health-threats\/coronavirus-disease-covid-19#what%27s-new-section)\n- **EUROFOUND –** [Eurofound – COVID-19 webpage](https:\/\/www.eurofound.europa.eu\/topic\/covid-19)\n\n1. [Living, working and COVID-19 (Update April 2021): Mental health and trust decline across EU as pandemic enters another year](https:\/\/www.eurofound.europa.eu\/publications\/report\/2021\/living-working-and-covid-19-update-april-2021-mental-health-and-trust-decline-across-eu-as-pandemic)\n2. [COVID-19: Implications for employment and working life](https:\/\/www.eurofound.europa.eu\/publications\/report\/2021\/covid-19-implications-for-employment-and-working-life)\n\nShow more\n\n## Other Resources\n***\n**Information from national and local rare disease patient groups**\n\nBelow is the information received from national and local rare disease patient groups on the latest COVID-19 developments.\n\n- Rare Diseases Czech Republic – [Aktuálně o koronaviru](https:\/\/koronavirus.mzcr.cz\/?fbclid=IwAR0WoNwhxUgPyi061huqDLLoMilF4XlVv-70o0VJIDDQDCrvDnffq35v_84)\n- Rare Diseases Denmark – [Information om coronavirus – opdateret](https:\/\/sjaeldnediagnoser.dk\/information-om-coronavirus\/)\n- France: Alliance Maladies Rares [ENQUÊTE – maladies rares et COVID,](https:\/\/www.alliance-maladies-rares.org\/wp-content\/uploads\/2020\/11\/enquete-covidmaladisRaresOctobre2020.pdf) [Maladies Rares Info Services,](https:\/\/www.maladiesraresinfo.org\/) AFM-Téléthon – [Coronavirus : informations et recommandations](https:\/\/www.afm-telethon.fr\/coronavirus)\n- Germany: [COVID-19 Informationscenter](https:\/\/www.achse-online.de\/de\/Aktuelles\/2021\/0101-Wir-sind-fuer-Sie-da.php)\n- Hong Kong: [Study on the “Impact of the COVID-19 pandemic on patients with rare disease in Hong Kong” in collaboration with the University of Hong Kong and Rare Disease Hong Kong](https:\/\/www.sciencedirect.com\/science\/article\/pii\/S1769721220307722)\n- Rare Diseases Ireland – [Resources for the rare disease community in Ireland](http:\/\/rdi.ie\/covid-19\/)\n- Italy: UNIAMO – [COVID-19 e malattie rare,](http:\/\/www.uniamo.org\/covid-19-e-malattie-rare\/) UNIAMO – [COVID-19 webinars](http:\/\/www.youtube.com\/channel\/UCoxxNtLnU4aQycXzafaBGYg\/videos)\n- Japan: [希少・難治性疾患 海外動向（COVID-19](https:\/\/asrid.org\/covid19_reports)\n- Netherlands: VSOP – [Corona-nieuws](https:\/\/vsop.nl\/actueel\/corona-nieuws\/)\n- Norway: Norwegian Federation of Organisations of Disabled People – [Korona-informasjon](https:\/\/www.ffo.no\/Tema\/ffos-kornoahjelp\/)\n- Spain: Duchenne España – [COVID-19](https:\/\/www.duchenne-spain.org\/blog\/category\/covid-19\/)\n- UK: Ehlers Danlos Society – [COVID-19 update,](http:\/\/www.ehlers-danlos.com\/covid-19-update\/) Genetic Alliance UK – [Information hub for COVID-19](http:\/\/covid-19.geneticalliance.org.uk\/)[,](http:\/\/covid-19.geneticalliance.org.uk\/wp-content\/uploads\/2020\/07\/Covid-19-Rare-Reality.pdf) Tuberous Sclerosis Association – [Coronavirus and TSC (Tuberous Sclerosis Complex)](https:\/\/tuberous-sclerosis.org\/news-coronavirus-tsc\/)\n- USA: NORD (National Organization for Rare Disorders) – [COVID-19 Resource Center](https:\/\/rarediseases.org\/covid-19\/)\n\n**Information from European-level disease networks and federations**\n\n- ESC (European Society of Cardiology) – [Q\\&A for COVID-19 and Heart Patients](http:\/\/www.escardio.org\/Education\/COVID-19-and-Cardiology\/what-heart-patients-should-know-about-the-coronavirus-covid-19)\n- Myeloma Patients Europe – [Information on Coronavirus and Myeloma](http:\/\/www.mpeurope.org\/wp-content\/uploads\/2020\/03\/Coronavirus-and-myeloma-FINAL-.pdf)\n- European Paediatric Neurology Society – [COVID-19 and neurological disorders](http:\/\/www.epns.info\/covid-19-and-neurological-disorders\/)\n- European Patients Forum – [COVID-19 Resource Point](http:\/\/www.eu-patient.eu\/COVID-19\/covid-resource-point\/)\n\n**Information from European Reference Networks**\n\n- MetabERN – [Recommendations for all Rare Inherited Metabolic Diseases patients andcaregivers about treatment adherence during the COVID-19 emergency](http:\/\/metab.ern-net.eu\/covid-19\/)\n- ERN ITHACA – [General advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders](http:\/\/ern-ithaca.eu\/wp-content\/uploads\/2020\/03\/General-advice-regarding-Coronavirus-v.1.2-23.3.20-00000002.pdf)\n- EuroBloodNet (ERN for rare hematological diseases) – [COVID-19 information](http:\/\/eurobloodnet.eu\/)\n- MetabERN – [Recommendations for all rare inherited metabolic diseases patients and caregivers about treatment adherence during the COVID-19 emergency](http:\/\/metab.ern-net.eu\/wp-content\/uploads\/2020\/04\/Information-for-all-patients-with-rare-IMDs-vs4.pdf)\n- VASCERN – [VASCERNs COVID-19 Recommendations](https:\/\/vascern.eu\/home\/vascerns-covid19-recommendations\/)\n\n**Information from international groups**\n\n- CML Advocates Network – [Chronic Myeloid Leukemia (CML) and COVID-19](https:\/\/covid19.cmladvocates.net\/)\n- Congenital Hyperinsulin International- [COVID-19 Information for the HI Community](https:\/\/congenitalhi.org\/covid-19-information-for-the-hi-community\/)\n- European League Against Rheumatism (EULAR) – [Database to monitor and report outcomes of COVID-19 occurring in patients with rheumatic and musculoskeletal diseases](http:\/\/www.eular.org\/eular_covid19_database.cfm)\n- International Alliance of Patients’ Organizations (IAPO) – [Coronavirus (COVID-19) Resources Hub](http:\/\/www.iapo.org.uk\/coronavirus-covid-19-resources-hub)\n- International Brain Tumour Alliance – [COVID-19 information for the international brain tumour community](https:\/\/web.archive.org\/web\/20220704212556\/http:\/\/theibta.org\/covid-19\/)\n- International Federation for Spina Bifida and Hydrocephalus (IFSBH) – [COVID-19 resources](http:\/\/www.ifglobal.org\/covid-19-resources\/)\n- International Disability Alliance – [Key Recommendations toward a disability-inclusive COVID-19 response](http:\/\/www.internationaldisabilityalliance.org\/content\/covid-19-and-disability-movement)\n- Rare Diseases International – [COVID-19 resources centre](https:\/\/www.rarediseasesinternational.org\/covid-19-resource-center\/)\n- Thalassaemia International Federation – [The COVID-19 pandemic and haemoglobin disorders](https:\/\/thalassaemia.org.cy\/wp-content\/uploads\/2020\/04\/Haemoglobin-Disorders_-Blood-COVID-19.pdf)\n- World CDG Organization – [FAQ about COVID-19 and CDG (Congenital Disorders of Glycosilation)](https:\/\/www.worldcdg.org\/covid-19\/faq)\n- World Duchenne Organization – [Daily updates on COVID-19 and Duchenne & Becker muscular dystrophy](http:\/\/www.worldduchenne.org\/news\/live-covid-19-coronavirus-and-duchenne-becker-muscular-dystrophy\/)\n\nShow more\n\nKeep up to date with the latest news, events, and campaigns from EURORDIS\n\n[Subscribe](https:\/\/www.eurordis.org\/newsletter-signup\/)\n\nConnect with Eurordis\n\n- [Facebook](https:\/\/www.facebook.com\/eurordis)\n- [Twitter](https:\/\/twitter.com\/eurordis)\n- [Instagram](https:\/\/www.instagram.com\/eurordis\/)\n- [LinkedIn](https:\/\/www.linkedin.com\/company\/eurordis\/)\n\n- [Terms & Conditions](https:\/\/www.eurordis.org\/terms-conditions\/)\n- [Privacy Policy](https:\/\/www.eurordis.org\/privacy-policy\/)\n- [Cookie Policy](https:\/\/www.eurordis.org\/cookie-policy\/)\n\nManage consent\n\nNotifications","attrs_readable_markdown":null,"meta_canonical":null}

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Boilerpipe Text	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
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[Join the EURORDIS Round Table of Companies](https://www.eurordis.org/get-involved/join-the-eurordis-round-table-of-companies/) - [Support EURORDIS](https://www.eurordis.org/support-eurordis/) - [Careers](https://www.eurordis.org/get-involved/jobs/) - [Join Our Activities](https://www.eurordis.org/covid-19-information-resource-centre/) - [EURORDIS Open Academy](https://openacademy.eurordis.org/) - [Rare Disease Week](https://www.eurordis.org/rare-disease-policy/european-policy/brussels-rare-disease-week/) - [Rare Barometer](https://www.eurordis.org/rare-barometer/english/) - [Rare Disease Day](https://www.rarediseaseday.org/) - [Attend Our Events](https://www.eurordis.org/category/events/) - [Black Pearl Awards](https://www.eurordis.org/black-pearl-awards/) - [European Conference on Rare Diseases (ECRD)](https://www.rare-diseases.eu/) - [Membership Meeting](https://www.eurordis.org/who-we-are/our-members/eurordis-membership-meeting/) [Newsroom](https://www.eurordis.org/category/newsroom/ "Newsroom") [Multimedia](https://www.eurordis.org/multimedia/ "Multimedia") [Events](https://www.eurordis.org/category/events/ "Events") [Members](https://www.eurordis.org/who-we-are/our-members/ "Members") [Resources](https://www.eurordis.org/resources/ "Resources") [Contact us](https://www.eurordis.org/contact-us/ "Contact us") [Accessibility Options](https://www.eurordis.org/accessibility-options/ "Accessibility Options") [Donate](https://www.eurordis.org/donate/) [Home](https://www.eurordis.org/ "Go to EURORDIS-Rare Diseases Europe.") \\ COVID-19 Information Resource Centre ## COVID-19 Information Resource Centre ![](https://www.eurordis.org/wp-content/uploads/2022/12/COVID-19-website-banner-1024x213.jpg) 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](https://web.archive.org/web/20220704212556/mailto: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](https://www.eurordis.org/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](https://www.eurordis.org/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](https://www.eurordis.org/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](https://www.eurordis.org/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](https://www.eurordis.org/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](http://download2.eurordis.org/rbv/covid19survey/PressRelease_COVID19surveyresults_Final2.pdf) (11 November 2020) ![](https://www.eurordis.org/wp-content/uploads/2023/02/covid-09_generated-1024x1024.jpg) ### 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](https://www.eurordis.org/publications/how-has-covid-19-impacted-people-with-rare-diseases/) of the survey in Europe. ## Vaccines - [European Vaccines Information Portal](https://vaccination-info.eu/en) (EVIP) – Available in all EU languages - [COVID-19 Vaccines Global Access](https://www.gavi.org/covax-facility) (COVAX) ### List of [authorised vaccines](https://www.ema.europa.eu/en/human-regulatory/overview/public-health-threats/coronavirus-disease-covid-19/treatments-vaccines-covid-19) in the EU to prevent COVID-19 - [Nuvaxovid](https://www.ema.europa.eu/en/medicines/human/EPAR/nuvaxovid), 20 December 2021 - [Janssen](https://www.ema.europa.eu/en/medicines/human/EPAR/covid-19-vaccine-janssen) (also known as the Johnson & Johnson COVID-19 vaccine), 11 March 2021 - [Vaxzevria](https://www.ema.europa.eu/en/medicines/human/summaries-opinion/covid-19-vaccine-astrazeneca) (also known as the AstraZeneca COVID-19 vaccine), 29 January 2021 - [Moderna](https://www.ema.europa.eu/en/medicines/human/EPAR/covid-19-vaccine-moderna), 6 January 2021 - [Comirnaty](http://www.ema.europa.eu/en/medicines/human/EPAR/comirnaty) (also known as the Pfizer-BioNTech COVID-19 vaccine), 21 December 2020 ### Additional Resources - [Covid factsheet from the European Lung Foundation](https://europeanlung.org/en/information-hub/factsheets/covid-19-factsheet/) - [“Let’s Talk About Vaccination” EPF Patient Guide](https://www.eu-patient.eu/globalassets/library/publications/lets-talk-about-vaccination_final2021-double.pdf) - [The Science of COVID-19 Vaccines](https://coronaviruspreventionnetwork.org/coronavirus-vaccine-and-antibody-science/) and Monoclonal Antibodies (COVID-19 Prevention Network) - [Shot Callers](https://www.youtube.com/watch?reload=9&v=t3IcbF0579M&feature=youtu.be): A Virtual Event on COVID-19 Vaccines - Visual materials on [mRNA](https://www.consilium.europa.eu/en/infographics/covid-19-mrna-vaccine/) and [viral vector vaccines](https://www.consilium.europa.eu/en/infographics/covid-19-viral-vector-vaccines/) Vaccination guidelines – Ensuring equitable access to vaccines - [Connect4children’s Podcast: The how and why of COVID-19 vaccines for children](https://www.buzzsprout.com/1756930/8376771) - [European Cancer Patient Coalition’s vaccination guidelines for cancer patients](https://ecpc.org/covid-19-information/#vaccination-guidelines) - [Disability considerations for COVID-19 vaccination: WHO and UNICEF policy brief](https://www.who.int/publications/i/item/who-2019-ncov-vaccination-and-disability-policy-brief-2021.1) - The [recommendations of *all* ERNs on both priorities and contra-indications for vaccination](http://download2.eurordis.org/documents/pdf/20210205_summary_ERN_COVID-19_Vaccination_DEF.pdf) for people living with rare diseases - The [recommendations](https://ern-skin.eu/vaccination-advices/) 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](https://alan.lu/wp-content/uploads/2021/06/Rapport-vaccination-final-1.pdf) (in French) - [Pro Rare Austria: Information on Vaccines for People with Rare Diseases](https://www.prorare-austria.org/newsroom/aktuelles/news/covid-19-impfung-informationen-und-stellungnahme-von-pro-rare-austria-1/) (in German) - [Overview of the implementation of COVID-19 vaccination strategies and vaccine deployment plans in the EU/EEA](https://www.ecdc.europa.eu/sites/default/files/documents/Overview-of-COVID-19-vaccination-strategies-deployment-plans-in-the-EU-EEA.pdf) ## 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. ![](https://www.eurordis.org/wp-content/uploads/2023/02/vecteezy_long-term-effects-of-covid-19-of-post-covid-19-syndrome_10462238-1024x1024.jpg) ### Organisations: ##### **LongCOVID ACTS (Spain) The Spanish collective of Long COVID sufferers. [Twitter page](https://twitter.com/longcovidspain) \\| [Facebook page](https://web.archive.org/web/20220704212556/https://www.facebook.com/groups/256612158996233/) ##### Leben mit Corona (Switzerland) Offers long-term sick people and their relatives support, information and help. [Website](https://leben-mit-corona.ch/) \\| [Send an email](http://leben-mit-corona.ch/) ##### \#ApresJ20 (France) Information on Long COVID, specialised HCP, research and treatments. [Website](https://www.apresj20.fr/) \\| [Send an email](http://apresj20.fr/) ##### **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](https://www.longcovidsos.org/) ##### 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](https://longcovideurope.org/?fbclid=IwAR0w3-9sCL0eE7xn-aMYNNtZra1yFFbP4Jj6BtYBx6H-gS4UeHqviDPTkAY) ##### **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](https://www.wearebodypolitic.com/covid19) ##### **Long COVID Kids (United Kingdom)** Advocacy group for kids with Long COVID. [Website](https://www.longcovidkids.org/) [\\|](https://web.archive.org/web/20220704212556/https://www.longcovidkids.org/) [Twitter page](https://twitter.com/LongCovidKids) \\| [Facebook page](https://web.archive.org/web/20220704212556/https://www.facebook.com/longcovidkids) ##### **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](https://www.post-covid.org.uk/) ##### **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](https://patientresearchcovid19.com/) \\| [Send an email](http://patientresearchcovid19.com/) 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. * - [Official Sources](https://www.eurordis.org/covid-19-information-resource-centre/#XwYXLR3nNKV1) - [Other Resources](https://www.eurordis.org/covid-19-information-resource-centre/#XwYXLR3nNKV2) ## Official Sources * 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](http://ec.europa.eu/info/live-work-travel-eu/health/coronavirus-response_en) 1. [THE ORGANISATION OF RESILIENT HEALTH AND SOCIAL CARE FOLLOWING THE COVID-19 PANDEMIC](https://ec.europa.eu/health/sites/health/files/expert_panel/docs/026_health_socialcare_covid19_en.pdf) 2. [COVID-19 Health System Response Monitor](http://www.covid19healthsystem.org/mainpage.aspx) – examining health system responses to COVID-19 3. [The scientific, technological and societal conditions for the end of the COVID-19 crisis](hhttps://op.europa.eu/en/publication-detail/-/publication/cbd15185-bdcd-11eb-8aca-01aa75ed71a1/language-en) 4. [Guidance on the management of clinical trials during the COVID-19 (coronavirus) pandemic](http://ec.europa.eu/health/sites/health/files/files/eudralex/vol-10/guidanceclinicaltrials_covid19_en.pdf?utm_source=POLITICO.EU&utm_campaign=bc6c97e2e3-EMAIL_CAMPAIGN_2020_04_28_12_07&utm_medium=email&utm_term=0_10959edeb5-bc6c97e2e3-190044093) (04 February 2021) 5. [EU CCP Database – Covid-19 convalescent plasma collection and transfusion in the EU](http://ec.europa.eu/health/blood_tissues_organs/covid-19_en) - European Court of Auditors (ECA) – [The EU’s initial contribution to the public health response to COVID-19](https://www.eca.europa.eu/en/Pages/DocItem.aspx?did=57722) - World Health Organisation (WHO) – [Coronavirus Pandemic page](https://www.who.int/emergencies/diseases/novel-coronavirus-2019) - European Medicines Agency (EMA) – Read the EMA’s [latest COVID-19 news alerts](http://www.ema.europa.eu/en/human-regulatory/overview/public-health-threats/coronavirus-disease-covid-19#what%27s-new-section) - EUROFOUND – [Eurofound – COVID-19 webpage](https://www.eurofound.europa.eu/topic/covid-19) 1. [Living, working and COVID-19 (Update April 2021): Mental health and trust decline across EU as pandemic enters another year](https://www.eurofound.europa.eu/publications/report/2021/living-working-and-covid-19-update-april-2021-mental-health-and-trust-decline-across-eu-as-pandemic) 2. [COVID-19: Implications for employment and working life](https://www.eurofound.europa.eu/publications/report/2021/covid-19-implications-for-employment-and-working-life) Show more ## Other Resources * 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. - Rare Diseases Czech Republic – [Aktuálně o koronaviru](https://koronavirus.mzcr.cz/?fbclid=IwAR0WoNwhxUgPyi061huqDLLoMilF4XlVv-70o0VJIDDQDCrvDnffq35v_84) - Rare Diseases Denmark – [Information om coronavirus – opdateret](https://sjaeldnediagnoser.dk/information-om-coronavirus/) - France: Alliance Maladies Rares [ENQUÊTE – maladies rares et COVID,](https://www.alliance-maladies-rares.org/wp-content/uploads/2020/11/enquete-covidmaladisRaresOctobre2020.pdf) [Maladies Rares Info Services,](https://www.maladiesraresinfo.org/) AFM-Téléthon – [Coronavirus : informations et recommandations](https://www.afm-telethon.fr/coronavirus) - Germany: [COVID-19 Informationscenter](https://www.achse-online.de/de/Aktuelles/2021/0101-Wir-sind-fuer-Sie-da.php) - Hong Kong: [Study on the “Impact of the COVID-19 pandemic on patients with rare disease in Hong Kong” in collaboration with the University of Hong Kong and Rare Disease Hong Kong](https://www.sciencedirect.com/science/article/pii/S1769721220307722) - Rare Diseases Ireland – [Resources for the rare disease community in Ireland](http://rdi.ie/covid-19/) - Italy: UNIAMO – [COVID-19 e malattie rare,](http://www.uniamo.org/covid-19-e-malattie-rare/) UNIAMO – [COVID-19 webinars](http://www.youtube.com/channel/UCoxxNtLnU4aQycXzafaBGYg/videos) - Japan: [希少・難治性疾患海外動向（COVID-19](https://asrid.org/covid19_reports) - Netherlands: VSOP – [Corona-nieuws](https://vsop.nl/actueel/corona-nieuws/) - Norway: Norwegian Federation of Organisations of Disabled People – [Korona-informasjon](https://www.ffo.no/Tema/ffos-kornoahjelp/) - Spain: Duchenne España – [COVID-19](https://www.duchenne-spain.org/blog/category/covid-19/) - UK: Ehlers Danlos Society – [COVID-19 update,](http://www.ehlers-danlos.com/covid-19-update/) Genetic Alliance UK – [Information hub for COVID-19](http://covid-19.geneticalliance.org.uk/)[,](http://covid-19.geneticalliance.org.uk/wp-content/uploads/2020/07/Covid-19-Rare-Reality.pdf) Tuberous Sclerosis Association – [Coronavirus and TSC (Tuberous Sclerosis Complex)](https://tuberous-sclerosis.org/news-coronavirus-tsc/) - USA: NORD (National Organization for Rare Disorders) – [COVID-19 Resource Center](https://rarediseases.org/covid-19/) Information from European-level disease networks and federations - ESC (European Society of Cardiology) – [Q\&A for COVID-19 and Heart Patients](http://www.escardio.org/Education/COVID-19-and-Cardiology/what-heart-patients-should-know-about-the-coronavirus-covid-19) - Myeloma Patients Europe – [Information on Coronavirus and Myeloma](http://www.mpeurope.org/wp-content/uploads/2020/03/Coronavirus-and-myeloma-FINAL-.pdf) - European Paediatric Neurology Society – [COVID-19 and neurological disorders](http://www.epns.info/covid-19-and-neurological-disorders/) - European Patients Forum – [COVID-19 Resource Point](http://www.eu-patient.eu/COVID-19/covid-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](http://metab.ern-net.eu/covid-19/) - ERN ITHACA – [General advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders](http://ern-ithaca.eu/wp-content/uploads/2020/03/General-advice-regarding-Coronavirus-v.1.2-23.3.20-00000002.pdf) - EuroBloodNet (ERN for rare hematological diseases) – [COVID-19 information](http://eurobloodnet.eu/) - MetabERN – [Recommendations for all rare inherited metabolic diseases patients and caregivers about treatment adherence during the COVID-19 emergency](http://metab.ern-net.eu/wp-content/uploads/2020/04/Information-for-all-patients-with-rare-IMDs-vs4.pdf) - VASCERN – [VASCERNs COVID-19 Recommendations](https://vascern.eu/home/vascerns-covid19-recommendations/) Information from international groups** - CML Advocates Network – [Chronic Myeloid Leukemia (CML) and COVID-19](https://covid19.cmladvocates.net/) - Congenital Hyperinsulin International- [COVID-19 Information for the HI Community](https://congenitalhi.org/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](http://www.eular.org/eular_covid19_database.cfm) - International Alliance of Patients’ Organizations (IAPO) – [Coronavirus (COVID-19) Resources Hub](http://www.iapo.org.uk/coronavirus-covid-19-resources-hub) - International Brain Tumour Alliance – [COVID-19 information for the international brain tumour community](https://web.archive.org/web/20220704212556/http://theibta.org/covid-19/) - International Federation for Spina Bifida and Hydrocephalus (IFSBH) – [COVID-19 resources](http://www.ifglobal.org/covid-19-resources/) - International Disability Alliance – [Key Recommendations toward a disability-inclusive COVID-19 response](http://www.internationaldisabilityalliance.org/content/covid-19-and-disability-movement) - Rare Diseases International – [COVID-19 resources centre](https://www.rarediseasesinternational.org/covid-19-resource-center/) - Thalassaemia International Federation – [The COVID-19 pandemic and haemoglobin disorders](https://thalassaemia.org.cy/wp-content/uploads/2020/04/Haemoglobin-Disorders_-Blood-COVID-19.pdf) - World CDG Organization – [FAQ about COVID-19 and CDG (Congenital Disorders of Glycosilation)](https://www.worldcdg.org/covid-19/faq) - World Duchenne Organization – [Daily updates on COVID-19 and Duchenne & Becker muscular dystrophy](http://www.worldduchenne.org/news/live-covid-19-coronavirus-and-duchenne-becker-muscular-dystrophy/) Show more Keep up to date with the latest news, events, and campaigns from EURORDIS [Subscribe](https://www.eurordis.org/newsletter-signup/) Connect with Eurordis - [Facebook](https://www.facebook.com/eurordis) - [Twitter](https://twitter.com/eurordis) - [Instagram](https://www.instagram.com/eurordis/) - [LinkedIn](https://www.linkedin.com/company/eurordis/) - 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