Zsófia Bakonyi

Partnerships, Patient Engagement @UCB, All views my own. Retweets not endorsement.

[Zsófia Bakonyi @ZsofiaBakonyi]

Proud to be part of the global #rehumatology team @ucb_news with John Ioannou and many others, working to improve outcomes and elevating the standard of care for patients through #patientcentricity and innovation

[UCB News @ucb_news]

John Ioannou, Global Head of Medical Affairs, Rheumatology, shares #UCB’s mission to raise the standard of care for immune-mediated diseases.

Watch to hear how we aim to improve treatment access and develop research solutions for rheumatology.

https://t.co/HNjpYoppdj

[Dr. Dale Webb (he/him) @NASSchiefexec]

Women can wait a decade for a diagnosis of axial SpA https://t.co/mBhwleMaUV

[Urh Groselj @UrhGroselj]

1 child is born with #FH every minute, 95% are currently not diagnosed - great pediatric data from the global FH registry presented by ⁦@KanikaID⁩ from ⁦@fhscglobal⁩ at the ⁦@fhpatienteurope⁩ 2022 annual meeting in Lisbon

[FH Europe Foundation @fhpatienteurope]

“Preventing the preventable”a high level political session with experts representing patient, scientific, medical & political perspectives discussing how our community can and must collaborate in order to effectively advocate for systematic solutions for CVH.
#FHEuropeLisbon22

[Zsófia Bakonyi @ZsofiaBakonyi]

So proud to have been part of this! Thank you and congrats to my fellow panellists who have shared their outstanding knowledge and personal experiences to improve lives of women with FH. @HolvenKirsten @ChyrelLi @j_rvl @MeralKayikcoglu #fhaware

[FH Europe Foundation @fhpatienteurope]

What a fabulous panel of experts! Bravo ladies!!!! One of the most engaging, informative and so needed webinars in a looooong time. #FHaware with you is easy and fun!

[FH Europe Foundation @fhpatienteurope]

What a fabulous panel of experts! Bravo ladies!!!! One of the most engaging, informative and so needed webinars in a looooong time. #FHaware with you is easy and fun!

[FH Europe Foundation @fhpatienteurope]

Ladies, the upcoming FH Awareness Day is all about YOU!!!

Join our expert panellist! 5 incredible #women, sharing their experience of living with #FH & #HoFH, and supporting women with inherited high #cholesterol!

Register https://t.co/BwhazPRDy1
#FindFH #FHaware #WomensHealth

[Zsófia Bakonyi @ZsofiaBakonyi]

Closing remarks from Tjasa Zajc,Ivett Jakab and Marco Greco.Huge congrats on the #EPFCongress2021 exploring what patient expect from #digitaltransformation of #healthcare. Keywords are education, co-creation & opportunity. It was great to see the #DataSavesLives Toolkit launched!

[DataSavesLives @DataSaves_Lives]

LIVE🔴 one final question. Jessica Pacey @67health asks:

🧐What is the biggest opportunity to have the biggest impact to improve trust in #healthdata & health data sharing among the public? What are the challenges? #EPFCongress2021 #datasaveslives

Closing thoughts 👇🧵

[European Patients' Forum @eupatientsforum]

IN SESSION AT #EPFCongress2021
"Improving medicine innovation through health data: #clinicaltrials and digital health"

💬Panel Discussion with:
🔹 @dathax
🔹 Peter Arlett (@EMA_News)
🔹 Martina von Meyenn (@Roche_BeLux @Roche)

🎙Moderated by @KaisaBxl

[Zsófia Bakonyi @ZsofiaBakonyi]

Delighted to support @eudaiichisankyo’s #CardioExplore #patient hackhaton as a jury member with @k_srensen , @DominikBohler , Prof. David Wood and others to inspire ideas and find solutions to support #CVD patients focusing on #Healthliteracy #healthylifestyle #motivation.

[Zsófia Bakonyi @ZsofiaBakonyi]

@IMI_JU has changed the culture of patient engagement in #healthresearch. We strive to continue this journey and keep doing the right thing for #patients with #patients @MagdaEfpia @EFPIA

[Zsófia Bakonyi @ZsofiaBakonyi]

"Research is hope" @jayneGoodrick @IMI_JU #WeWontRest #PatientEngagement

[Zsófia Bakonyi @ZsofiaBakonyi]

"After a devastating diagnosis we found our ground being engaged in research." - Thank you Chris Roberts and @JayneGoodrick for sharing your experiences @IMI_JU #patientenagagement @RADARAD7

[Zsófia Bakonyi @ZsofiaBakonyi]

A wonderful panel of #patients sharing their personal experiences with how @IMI_JU projects have involved them meaningfully, touched their lives and changed the way we think about #patientengagement @RADARAD7 @ProstatePioneer #BeaboutPatients @MagdaEfpia

[Zsófia Bakonyi @ZsofiaBakonyi]

An excellent opportunity for patients and patient organisations to learn more about #RWD by @IMI_EHDEN

[EHDEN @IMI_EHDEN]

Delighted to launch the first module of a non-expert, patient organisation course on real world data and research on #EHDENAcademy in partnership with @eupatientsforum, to demystify real world research! @IMI_JU @EFPIA @OHDSI more at https://t.co/DSLIpLZ8Tu

[Zsófia Bakonyi @ZsofiaBakonyi]

A moment to celebrate working together, learning together and get inspired for future collaboration #WeWontRest #PatientsFirst #ConnectingHealthcare @eupatientsforum @filicevas @Birgitpower @borisazais @jk_austin @NABedlington @katie_rizvi @AndersBlanck @NathalieMoll

[EFPIA @EFPIA]

The first EFPIA Patient Engagement Newsletter outlines our vision for working with patient organisations and highlights some key contributions in the field from the last six months: https://t.co/VBB8mqwRHq
#WeWontRest #BeAboutPatients #ConnectingHealthcare

[Valentina Strammiello @ValeStrammi]

How can we -EU level Health NGOs- ensure independence if access to EU funding is limited to targeted actions? Strong and sustainable NGOs come with strong operations and advocacy! #SaveEUHealthNGOs #BringBackOperatingGrants

[Sini Eskola @sinieskola]

#Patients as #PsoriaticArthritis research partners!👍 @EFPIA @ZsofiaBakonyi

[Zsófia Bakonyi @ZsofiaBakonyi]

Oh yeah! I am #TeamVaccines #HappilyVaccinated #WeWontRest