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Long COVID Rise Up

@longcovidriseup.bsky.social
184 followers 65 following 42 posts

International Federation advocating for #LongCOVID research and prevention | Together, we rise! 💪😷 #StopTheDiseaseProcess #BlockTheSpread www.longcovidriseup.eu

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Reposted by Long COVID Rise Up
Winslow Santé Publique @winslowsp.bsky.social · 05/09/2026
👉🏻 Notre table ronde (sans table mais avec des intervenants passionnants) sur la pandémie et la crise climatique : @elisarojas.bsky.social, Antoine Dubiau, @ricardoparreira.com, collectif DSAVEC et Winslow Santé Publique.
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Winslow Santé Publique @winslowsp.bsky.social · 21/07/2026
✍️ La publication réponse de @solenntango.bsky.social : "Covid Long, entre repli syndromique et exigence étiologique" est parue sur le site de médecine/sciences (DOI: doi.org/10.1051/meds...). #CovidLong La version auteure est également disponible sur une page de notre site winslow.fr/article-dans...
winslow.fr
Article dans médecine/sciences - Winslow Santé Publique
Une réponse dans le forum de médecine/sciences à un article paru sur le COVID long dans le même journal en février
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Winslow Santé Publique @winslowsp.bsky.social · 04/07/2026
Nous lançons donc un appel à dons. Chaque don compte et servira à assurer le meilleur accueil possible du public, des bénévoles, des intervenant·es et des artistes, et à renforcer l’accessibilité de l’événement. 👉 La cagnotte est ici : www.helloasso.com/as... 3/4
helloasso.com
Festival d'autodéfense sanitaire : 509 PPM - Prévention, Politique, Musique
Financement participatif organisé par Winslow Santé Publique - Aidez-nous à financer ce festival destiné à se retrouver, discuter de nos militances, s'amuser et profiter de la musique de COVID Cautious !
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Winslow Santé Publique @winslowsp.bsky.social · 04/07/2026
Notre association, avec l’ARRA & le Mask Block Paris, organise son 1er festival d’autodéfense sanitaire en France : 509 PPM - Prévention, Politique, Musique. ❤️‍🔥 Rendez-vous les 5-6 septembre à la Parole Errante (Montreuil) pour un événement à la fois militant et festif 1/4
affiche avec un gros masque rose. Derrière apparait 509 PPM, répété sur plusieurs lignes
Festival d'autodéfense sanitaire
5-6 septembre 2026
La parole errante, Montreuil
Tables rondes - concerts - Ateliers 
Entrée prix libre
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Winslow Santé Publique @winslowsp.bsky.social · 26/06/2026
« Ces associations se fédèrent désormais à l'échelle internationale. Winslow SP fait par exemple partie de Long Covid Rise Up » @longcovidriseup.bsky.social
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Winslow Santé Publique @winslowsp.bsky.social · 26/06/2026
🗞️ Merci à Marie Jamet pour cet article pour dans des membres de notre association ont été interviewé•es : « Il m’a fallu un an pour qu’on me diagnostique un #Covidlong. Les médecins reconnaissaient que j’en souffrais, mais
point-health.eu
Long Covid: healing the broken link between research and diagnosis - Point
Five years after the first cases, patients with long Covid continue to go through months or years before receiving a diagnosis. Publications are increasing in number, and clinical recommendations exist. Yet, between the production of medical knowledge and the general practitioner's surgery, information gets lost.
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Long COVID Rise Up @longcovidriseup.bsky.social · 14/06/2026
🚨 Some time ago, we have written to the authors of the “Clinical Care Guide” (Bateman Center) to express our deep concern about its portrayal of #LongCOVID. While it addresses PEM, POTS & MCAS, it largely ignores the broader reality of this disease: 🔗 longcovidriseup.eu/bateman-letter/
longcovidriseup.eu
BATEMAN LETTER
A letter to the Bateman institute
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Dr Elisa Perego @elisaperego78.bsky.social · 02/06/2026
Long Covid is not "baffling" at all. There are thousands of publications which show multi-system pathology across all body systems, including extensive evidence of organ damage. The scientific and clinical evidence is undeniable and should be reported about accurately #LongCovid
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Dr Elisa Perego @elisaperego78.bsky.social · 20/05/2026
On this day, I want to express my gratitude and solidarity to all patients, advocates, patient-researchers and allies who have been fighting for years. But I also want to remember the lives lost, the pain, the suffering, the lack of care, the fight. Thinking about all of you. Thanks. #LongCovid
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Dr Elisa Perego @elisaperego78.bsky.social · 20/05/2026
Six years ago today the term #LongCovid was first used as a Twitter hashtag. A single tweet by a patient linked together a growing grassroots movement of people, who weren't recovering from covid. Across the world, we're still fighting for research and treatment of our disease
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Winslow Santé Publique @winslowsp.bsky.social · 19/05/2026
🚨📗 Encore un article à lire absolument, sur AOC, d'A. Monnin : "Sur « le vivre avec », du Covid à l’#hantavirus", qui analyse les réactions écologiques à l'alerte 🦠 récente et les prises de paroles telles que celle d'A. Desbiolles (Reporterre). aoc.media/opinion/20... 1/10
aoc.media
Sur « le vivre avec », du Covid à l’hantavirus - AOC media
« Vivre avec » le vivant, oui – mais avec quoi, comment, à quel seuil, et pour quels corps ? L'alerte hantavirus a suffi à rouvrir les fractures du Covid et à rejouer ses camps. Derrière ce clivage, une confusion que ni l'écologie du vivant ni la santé publique ne dissipent assez clairement : entre cohabiter avec des microbes et subir une exposition pathogène. Une distinction dont le coût, quand elle est esquivée, est toujours payé par les mêmes.
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Winslow Santé Publique @winslowsp.bsky.social · 08/05/2026
Just like in the heyday of Act Up, the activists, wearing FFP2 masks, stormed the stage. » "At the center of the controversy are French researchers (a psychiatrist and an internist) involved in a study at Hôtel-Dieu that highlights cognitive-behavioral therapies and mindfulness meditation,
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Winslow Santé Publique @winslowsp.bsky.social · 08/05/2026
🗞️ Press article « No, yoga is not the solution to long COVID » on the Long Covid EU project symposium, « quickly interrupted by people living with long COVID, who protested against the arguments put forward by some of the speakers that tended to 'psychologize' their condition.
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Long COVID Rise Up @longcovidriseup.bsky.social · 06/05/2026
🔥🔥🔥 we don’t need yoga or meditation 🔥🔥🔥 #StopTheDiseaseProcess #BlockTheSpread
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Solenn TANGUY @solenntango.bsky.social · 10/04/2026
@elisaperego78.bsky.social and myself, have written a response to Charlton et al. recent paper : "Reframing long covid around an overarching vision of PEM oversimplifies a complex landscape characterized by significant cardiovascular abnormalities and risks. Lire ici 🔗 bjsm.bmj.com/content/60/8...
Published on: 8 April 2026
Major concern: clinical risks of positioning post-exertional malaise as a “hallmark” of cardiovascular long COVID
Elisa Perego, Patient-researcher University College London
Solenn TANGUY, Expert Patient
Dear editor,
We read with attention the discussion article by Charlon and colleagues “Post-exertional malaise and the myth of cardiac deconditioning: rethinking the pathophysiology of long covid”. Charlton et al. present post-exertional malaise (PEM) as a hallmark of long covid and advocate for pacing strategies guided by wearable heart rate monitoring, and app-controlled progressive activity. This position raises concerns. Certainly, rejection of a “deconditioning” hypothesis in long covid is needed : as expert-patients, we know the harm it can cause. However, redefining long-covid cardiovascular involvement primarily through PEM risks undermining patient safety, especially when unsupported prevalence numbers of PEM in long-covid cohorts are cited (80%)
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Dr Elisa Perego @elisaperego78.bsky.social · 10/04/2026
This by @solenntango.bsky.social and myself is a response to a discussion by Charlton et al, who broadly suggested reframing cardiovascular Long Covid through PEM, to be managed with an app based monitoring bjsm.bmj.com/content/60/8...
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Dr Elisa Perego @elisaperego78.bsky.social · 10/04/2026
@solenntango.bsky.social and I write about the risks of centering syndromic/PEM-based models and app-based management in addressing cardiovascular #LongCovid "In a population already struggling to access specialized cardiology care, this may translate into missed opportunities for diagnosis"
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Long COVID Rise Up @longcovidriseup.bsky.social · 10/04/2026
👇👇👇
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Long COVID Rise Up @longcovidriseup.bsky.social · 23/03/2026
🙌 A must-read on #LongCovid, mechanisms and multisystemic consequences. Thank you @elisaperego78.bsky.social 👇👇👇
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Long COVID Rise Up @longcovidriseup.bsky.social · 18/03/2026
Inform about #LongCovid, and #BlockTheSpread in workplaces.
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Dr Elisa Perego @elisaperego78.bsky.social · 17/03/2026
Welcome @lcawarenessint.bsky.social to @longcovidriseup.bsky.social. We will keep fighting for the recognition of #LongCovid, treatments and prevention 🙏🔥 #LongCovidAwarenessDay #longcovidawarness
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Col.lectiu d'Afectades i Afectats persistents per la Covid 19 @covid19persist1.bsky.social · 11/03/2026
🗣️Setmana de conscienciació de la Covid Persistent. 🩵#DiaInternacionaldelaCovid #15Març2026 💊Una malaltia crònica i complexa provocada per una o múltiples infeccions pel SARS-Cov2. 🗓️ #6anys I encara hem reclamem el mateix. 🩺Atenció 🪩Reconeixement 🥽🥽 Visualització
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Long COVID Rise Up @longcovidriseup.bsky.social · 15/03/2026
🚨 The federation grows ! On this 15th march, we are proud and energized to announce that the pioneering group 🔥International Long COVID Awareness🔥 is joining forces with Long Covid Rise Up. Their voice makes us stronger. We are done with unchecked spread and no treatment.
5 logos: International Long COVID Awareness, Association Covid Long Solidarité, Asociacion Long COVID Aragon, Winslow Santé Publique, and Covid 19 persistent Catalunya, and the name of Elisa Perego, MA Phd
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Winslow Santé Publique @winslowsp.bsky.social · 14/03/2026
Each #LongCovid death is a scandal. Covid is avoidable with collective prevention measures. Mass infection policies kills. The words of Leslie Lee III still resonates
Black éléphant
Text : “Please start taking COVID seriously before more people have to suffer and die.”
Leslie Lee III
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Winslow Santé Publique @winslowsp.bsky.social · 14/03/2026
🖤🐘 March 14, we remember. #LongCovidAwareness Elephants never forget the ones they lose. Neither do we. Each black elephant marks a life lost to Long Covid. We are thinking of you. For the dead -and for the living, The fight continues. #LongCovidKills
Several elephants (4) on a black background.
Text : Long Covid kills
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Long COVID Rise Up @longcovidriseup.bsky.social · 13/03/2026
📢 French article on #LongCovidAwareness, thanks to Covid Long solidarité. #LongCovidHeartbeats are discussed, the @winslowsp.bsky.social Paris protest, and more. 2026. We need action now!
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Long COVID Rise Up @longcovidriseup.bsky.social · 13/03/2026
#StopTheDiseaseProcess #BlockTheSpread #LongCovidAwareness
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Long COVID Rise Up @longcovidriseup.bsky.social · 10/03/2026
💡Catalonia lights up!💡 Thanks to the efforts of @covid19_persistent, on March 15th, the Government of Catalonia and 20 + city councils in major cities will light up their city hall, or an iconic city building. #LongCovidAwareness makes #LongCovidHeartbeats visible ! 🩵🩶🖤
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Long COVID Rise Up @longcovidriseup.bsky.social · 01/03/2026
🎬 🗣️ Launch of #LongCOVIDAwarenessMonth and its theme of the cardiovascular effects of Covid and #LongCovid, with this video to share! #LongCovidHeartbeats 👉 Every patient counts, every heartbeat counts. (Youtube channel with several languages : www.youtube.com/playlist?lis...)
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AraInfo @arainfo.bsky.social · 09/03/2026
Seis años después de la pandemia, 2,4 millones de personas viven en el Estado español con covid persistente ‼️ Long Covid Aragón denuncia falta de reconocimiento, investigación y atención sanitaria y convoca concentración el 15 de marzo en Zaragoza: arainfo.org/?p=322997
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MaskTogetherAmerica @togetherwemask.bsky.social · 06/03/2026
On #LongCOVIDAwarenessDay (March 15), NYC should recognize #LongCOVID as a historic struggle and light up its City Hall in teal! Sign petition to @mayor.nyc.gov! actionnetwork.org/petitions/pe... Join Us! 💚
The message from MaskTogetherAmerica invites everyone to sign a petition to Mayor Mamdani asking NYC to recognize Long COVID Awareness Day by lighting up the City Hall in teal on March 15th every year. NYCMayor Mamdani, please make our wish come true! 

Visual: The picture of New York City Hall was manipulated to show it lit up to honor the International Long COVID Awareness day on March 15th. Find the link to sign the petition in bio.Below the picture are logos of our cosponsors from left to right:
First row:
—Mask Together Colorado 
—Clean Air LA 
—Long COVID Foundation 
—Winslow Santé Publique 
—International Long Covid Awareness (ILCA)
—COVID Action GSO
—Long COVID Justice
—Clean Air Club
—Patient-Led Research Collaborative
—Clear the Air ATX
Second row:
—World Health Network
—Pan End It!
—Marked By COVID
—Asociación of Long COVID Aragón
—Public Health Action Network
—Long COVID Rise Up
—Air Support Project
—Care Not COVID Chicago
—Clean Air Advocacy Ireland
—COVID-19 Long Hauler Advocacy Project
Third Row:
MaskTogetherAmerica
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Winslow Santé Publique @winslowsp.bsky.social · 04/03/2026
When health communication remains outdated, the virus circulates freely and continues to cause damage. Millions of people are living with #LongCovid : they are a constant reminder of this. There is an urgent need to evolve. #Prevention #LongCovidAwareness
At the top, on a black background: aerosols.
Text: The Covid virus, SARS-CoV-2, is transmitted through the air via viral particles suspended in the air. Ventilation, air purification, and the use of FFP2 masks and UVC are effective means of prevention. No public awareness campaign in France sufficiently highlights this mode of transmission. Yet it is essential to prevent acute COVID, as well as the delayed consequences of this virus, particularly long COVID. Bottom, in large print: Ignorance is not a public health policy.
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Winslow Santé Publique @winslowsp.bsky.social · 04/03/2026
🔴 New poster diptych. COVID is transmitted through the air, and through ignorance. Ignorance of the data. Ignorance of blind spots. #PublicHealth Link : winslow.fr/ressource...
Text: You can't manage public health with outdated knowledge... Health authorities, if By refusing to adapt SARS-CoV-2 prevention measures. Larger text at bottom: Covid is transmitted through the air and through ignorance Image: An administrator sitting behind a desk, looking bored, behind an old computer.
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Winslow Santé Publique @winslowsp.bsky.social · 04/03/2026
Affiche 2 Des millions de personnes vivent avec un #Covidlong . Urgence d’évoluer.
En haut, sur fond noir : des aérosols.
Texte : Le virus du Covid, SARS-CoV-2, se transmet par voie aérienne, via des particules virales En suspension dans l’air. La ventilation, purification de l’air, utilisation de Masques FFP2, d’UVC, sont des moyens efficaces de le prévenir. Aucune campagne, grand public en France ne sensibilise suffisamment sur ce mode de transmission. C’est pourtant essentiel pour éviter le COVID aigu, mais aussi les conséquences différés de ce virus, notamment le COVID long.

En bas en gros : L’ignorance n’est pas une politique de santé publique
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Winslow Santé Publique @winslowsp.bsky.social · 04/03/2026
Affiche 1 Quand la communication sanitaire reste figée, le virus, lui, circule librement et continue de faire des dégâts.
Texte : Vous ne feriez pas de santé publique avec des connaissances dépasséEs…
Les Autorités sanitaires, si
En refusant d’adapter la prévention du SARS-CoV-2.
En plus gros en bas : le Covid se transmet par l’air et par l’ignorance
Image: Une personne de l’administration derrière un bureau, l’air blasée, Derrière un ancien ordinateur.
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Winslow Santé Publique @winslowsp.bsky.social · 04/03/2026
🔴 Nouveau dyptique d'affiches. Le COVID se transmet par l’air, Et par l’ignorance. Ignorance des données. Ignorance des angles morts. Ignorance des retards. Le #CovidLong en est le rappel permanent. #LongCovidAwareness #SantePublique #Prévention winslow.fr/ressource...
Texte : Vous ne feriez pas de santé publique avec des connaissances dépasséEs…
Les Autorités sanitaires, si
En refusant d’adapter la prévention du SARS-CoV-2.
En plus gros en bas : le Covid se transmet par l’air et par l’ignorance
Image: Une personne de l’administration derrière un bureau, l’air blasée, Derrière un ancien ordinateur.
En haut, sur fond noir : des aérosols.
Texte : Le virus du Covid, SARS-CoV-2, se transmet par voie aérienne, via des particules virales En suspension dans l’air. La ventilation, purification de l’air, utilisation de Masques FFP2, d’UVC, sont des moyens efficaces de le prévenir. Aucune campagne, grand public en France ne sensibilise suffisamment sur ce mode de transmission. C’est pourtant essentiel pour éviter le COVID aigu, mais aussi les conséquences différés de ce virus, notamment le COVID long.

En bas en gros : L’ignorance n’est pas une politique de santé publique
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Dr Elisa Perego @elisaperego78.bsky.social · 01/03/2026
Today International Long Covid Awareness Month starts #LongCovid
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Long COVID Rise Up @longcovidriseup.bsky.social · 01/03/2026
🎬 🗣️ Launch of #LongCOVIDAwarenessMonth and its theme of the cardiovascular effects of Covid and #LongCovid, with this video to share! #LongCovidHeartbeats 👉 Every patient counts, every heartbeat counts. (Youtube channel with several languages : www.youtube.com/playlist?lis...)
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International Long Covid Awareness @lcawarenessint.bsky.social · 01/03/2026
2026--Six years. Still sick. Still raising awareness for prevention & treatments! #LongCovidAwareness #LongCovid #LongCovidKids #LongCovidHeartbeats #LongCovidAwarenessDay #LongCovidAwarenessWeek #LongCovidAwarenessMonth #LitForLongCovid #OneInfectionAway #TakeActionAgainstLC
2026 International Long Covid Awareness social media ring with 6 gray dots and International Long Covid Awareness ribbon featuring year: 2026
white font reads: #LongCovidAwareness
Designed by: @haziethompson
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Asociación Long COVID Aragón @longcovidaragon.bsky.social · 01/03/2026
📣 En el marco del Día Internacional de la #COVIDPersistente #LongCovidAwarenessDay, convocamos una concentración: 📍 Plaza España, #Zaragoza 🕛 a las 12:00 horas 🩵 Os esperamos con familiares y amigos para que se nos visibilice 🫂 @lcawarenessint.bsky.social @longcovidriseup.bsky.social
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Winslow Santé Publique @winslowsp.bsky.social · 28/02/2026
🔴🐘 Nous appelons au rassemblement avec la participation d'@actioncovidlong.bsky.social, le 13 mars prochain devant l'Hotel Dieu à 14h, à l'occasion du #LongCOVIDAwareness. #EveryHeartbeatCounts Chaque personne compte, chaque battement de coeur compte. winslow.fr/long-covi...
LONG COVID AWARENESS DAY
Rassemblement 

Vendredi 13 mars 2026
14h

Devant l’Hôtel-Dieu (Paris, 75004)
#LongCovidAwareness
#EveryHeartbeatCounts
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International Long Covid Awareness @lcawarenessint.bsky.social · 20/02/2026
Global #LongCovid community, doctors, & researchers: We are working together to better define Long Covid. ➡️Please review the proposed definition & share your thoughts ➡️Share definition w/ Long Covid folks who aren't on social media Form⬇️ www.longcovidawareness.life/community-long-covid-defintion
Graphic

Font reads:
Help Define Long Covid!

Provide your insights on the Community Long Covid Definition up until March 5th so that the patients, medical professionals, and others have an updated and more complete Long Covid Definition.

Fill out the Google Form, see link, to provide your feedback.

Long Covid is a novel heterogenous multisystem chronic disease caused by SARS-CoV-2 infection ...

Black and white background with International Long Covid Awareness ribbon (teal, gray, & black)

Upper right:
Purple and white Google Form graphic

Lower right:
Purple megaphone graphic
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Dr Elisa Perego @elisaperego78.bsky.social · 12/02/2026
Honoured to join @longcovidriseup.bsky.social as a patient expert and researcher. We will continue to fight for more recognition of #LongCovid, for treatments, access to care, and prevention
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Long COVID Rise Up @longcovidriseup.bsky.social · 12/02/2026
⭐🎉 We are honored and proud to welcome Elisa Perego, researcher and expert patient (Italy), to our federation as a highly qualified member. @elisaperego78.bsky.social coined the term #LongCovid, giving a name and global visibility to a condition that millions were experiencing in silence.
Picture of Elisa Perego, expert patient and researcher ; picture of a Women, black hair, smiling
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Winslow Santé Publique @winslowsp.bsky.social · 10/02/2026
🗞️Article reprenant l'interview radio de notre présidente, pour la fédération #LongCOVIDRiseUp L'audio est disponible à l'écoute en entier ici : winslow.fr/winslow-medi... "On est invisibilisés : le cri d'alarme de la nouvelle Fédération COVID Long" Extraits🧵
winslow.fr
Winslow dans les médias
Les participations ou apparitions de notre association dans la presse écrite, à la télévision ou à la radio.
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Long COVID Rise Up @longcovidriseup.bsky.social · 10/02/2026
🗞️In this article, an interview with one of the co-presidents of our federation #LongCOVIDRiseUp Title : "We are been made invisible : the wake-up call from the new #LongCOVID Federation" Translated extracts🧵 maritima.fr/actualites/s...
maritima.fr
« On est invisibilisés » : le cri d’alarme de la nouvelle Fédération COVID Long
Six ans après l’apparition du virus, plus de deux millions de Français souffrent encore de symptômes persistants. Face à ce qu'elle qualifie de « négligence politique », une fédération internationale ...
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Long COVID Rise Up @longcovidriseup.bsky.social · 08/02/2026
🗞️In this article, an interview with one of the co-presidents of our federation. "#LongCOVID patients join forces in an international association: “Instead of progressing, we are being made invisible.”" Translated extracts 🧵 www.aragondigital.es/articulo/san...
aragondigital.es
Los pacientes de covid persistente se unen en una asociación internacional: “En vez de evolucionar, se nos invisibiliza”
La creación de Long Covid Rise Up, una nueva federación internacional, responde a la necesidad de situar la enfermedad en la agenda política europea
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Long COVID Rise Up @longcovidriseup.bsky.social · 07/02/2026
👉 More coverage about the launch of our federation, this time in the French media. 🎙️ On Monday, February 9, the president of @winslowsp.bsky.social and co-president of Long COVID Rise Up, will speak on Radio Maritima at 12h00. Don't miss it! ✨ #StopTheDiseaseProcess #BlockTheSpread
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Long COVID Rise Up @longcovidriseup.bsky.social · 06/02/2026
"Four European associations, including the one in Aragon, are joining forces to combat #LongCovid." #StopTheDiseaseProcess #BlockTheSpread #LongCOVIDRiseUp www.heraldo.es/noticias/ara...
heraldo.es
Cuatro asociaciones europeas, entre ellas la aragonesa, se unen para combatir la covid persistente
La federación reunirá a grupos de pacientes para exigir que se investigue sobre esta patología de forma “urgente".
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AraInfo @arainfo.bsky.social · 05/02/2026
Nace Long COVID Rise Up, una nueva alianza internacional para combatir la covid persistente. Cuatro organizaciones europeas, entre ellas Long COVID Aragón, impulsan esta federación que denuncia la inacción política y exige investigación urgente: arainfo.org/?p=321111
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