Writer, editor, EUPATI patient expert, author of 'Finding Rome on the Map of Love' & collage/crochet/brooch-making artist. Tweets are my own.
Switzerland
Joined April 2010
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Nous sommes ravis d'annoncer que les résultats de cette étude ont été publiés en libre accès dans le Journal of Endometriosis and Uterine Disorders:
“Strategies for self-management of endometriosis symptoms: An observational study”
doi.org/10.1016/j.jeud.2025.…
Vous êtes atteintes d’endométriose? Faites avancer la recherche clinique en participant à une étude sur les stratégies d’autogestion de l’endométriose #recherche #gynécologie #endométriose recherche.hug.ch/etudes/sage
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
Vous êtes atteintes d’endométriose? Faites avancer la recherche clinique en participant à une étude sur les stratégies d’autogestion de l’endométriose #recherche #gynécologie #endométriose recherche.hug.ch/etudes/sage
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
READ!
#StopCAB #ActNow #ProtectSAcreativity #ProtectOurCreators
@PresidencyZA @GovernmentZA @the_dtic
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
"New England Journal of Medicine reckons with its racist past and complicity in slavery." NEJM leading the way. @bmj_latest and @TheLancet must follow. statnews.com/2023/12/06/new-… via @statnews
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
This week is #CoProWeek 2022, and we’re talking all things #coproduction!
What is co-production? Take a look at this handy animation about the key principles that make up co-production and delve deeper in our guidance: learningforinvolvement.org.u…
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
"Why would someone pay $250K to go Titanic hunting?...."
I must say... This video really put it into perspective 😅
#OceanGateSub #OceanGate
Living in #Geneva, #francophone and suffering from #endometriosis? Take part in this survey to help #researchers at the @Hopitaux_unige learn about our "autogestion" coping strategies. Support research on our invisible disease!
Vous êtes atteintes d’endométriose? Faites avancer la recherche clinique en participant à une étude sur les stratégies d’autogestion de l’endométriose #recherche #gynécologie #endométriose recherche.hug.ch/etudes/sage
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
"I have learnt more about what effective patient advocacy and leadership can achieve since then,"
Take a look at this piece from @tessajlrichards in the @bmj_latest on the support she receives from patient networks: bmj.com/content/380/bmj.p758…
ALT Cartoon of a webpage with writing on it
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
📢Our preprint (i.e., not peer reviewed yet) is out! We're 6 #PatientPartners in 🇨🇦 sharing experiences on #PatientEngagement that "goes wrong" - osf.io/q3e76/. For reflection, not blame @Sabrina_Poirier @VinaMohabir @ProulxLaurie @suerobinsyvr @JefferySmithME #PPI
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
Participez au prochain café de la #recherche, mardi 14 mars de 12h30 à 13h30, sur le thème «les conflits d’intérêts dans la recherche», présenté par Monique Caillat, avocate spécialisée en droit de la santé et sciences de la vie #médecine #santé hug.ch/centre-innovation/con…
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
A brilliant short film by @UCLHresearch BRC. Involving people of all backgrounds and ethnicities in clinical research is hugely important in identifying treatments that work for everyone. @NIHRresearch 's Be Part of Research programme aims to address this.
uclhospitals.brc.nihr.ac.uk/…
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
So far, doctors can't help. My LoCo is treated by two brilliant specialists + supportive GP. All 3 tell me, w great honesty, that they don't know how to help me or their other LoCo patients. They listen, throw supportive measures at symptoms, but There. Is. No. Cure. Yet.
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
Press Release — Launching the Guidelines on Inclusive Language and Images in Scholarly Communication c4disc.org/2022/10/20/press-…
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
Why involve members of the public in research?
Find out more about why you should involve patients, carers and the public and how to plan, support and resource public involvement in your research in our briefing notes for researchers: nihr.ac.uk/documents/briefin…
ALT Why involve members of the public in research? People who are affected by research have a right to have a say in it. Members of the public can provide a different perspective. Involving members of the public can tailor your research to the needs of specific communities. Public involvement can make research more relevant. Funding bodies and ethics committees will ask about your plans for public involvement.
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
NIHR clinical academic @LaylaMofrad has shared her thoughts on power, equality, diversity and systemic change: the theory, barriers and enablers for patient and public involvement.
Take a look at her blog here: nationalelfservice.net/popul…
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
Many will welcome the Sun's decision to remove its hateful article targeting Meghan Markle, with its author reportedly "horrified" at the hurt it has caused.
Will we also see some wider reflection from the UK media industry on the hurt evidenced here?
xitter.cf/princessmeghn/status/1…
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
Your moment of Zen: I've watched this clip on loop I don't know how many times... it is effervescent.
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Speak out against racism. Do not turn a blind eye. Do not pretend you didn't hear it. Every time we say "I'm not getting involved" is the coward's way out and props up racism.
Estelle J 🇿🇦 🖋️🧶🎨📚 retweeted
This crushes me: 1 piece of #protestart zeros in on #CocaCola as harmful planetary polluter; eg of wider #climatecrisis. Storytelling central to predatory capitalist corp's domination. We drink it, #Coke profits, Africa dies of thirst. @JeremyRLent @RobGMacfarlane @GhoshAmitav
