#PatientInvolvement
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savaslab.bsky.social
Today is the day folks! ❤️

What an amazing recognition for the community and patient partners, everyone involved in our work and public engagement, and our supporters!!!! ❤️

#NewfoundlandAndLabrador #PatientInvolvement #Cancer #AtlanticCanada

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www.youtube.com/watch?v=zfY-...
CCRA 2025 Awardee Dr. Sevtap Savas
YouTube video by Canadian Cancer Research Alliance (CCRA)
www.youtube.com
November 2, 2025 at 1:52 PM
involvene.bsky.social
It's so important to listen to patients! 👇

#PatientInvolvement #PatientEngagment #Listen
jamesfm55.bsky.social James Munro @jamesfm55.bsky.social · Jan 16
The evidence base for the significance of patient narratives *as an intervention* continues to grow. This 2024 US paper shows that sharing patient stories widely with staff can improve the experiences of future patients.

journals.lww.com/hcmrjournal/...
January 16, 2025 at 1:50 PM
simonrstones.bsky.social
Today is #WORDDay2025 — a global movement dedicated to raising awareness of rheumatic diseases in children and young people! 💙🌍

#PatientAdvocacy #PatientAdvocate #PatientEngagement #PatientInvolvement #MedicalCommunications #Rheumatology #RMDs #WORDDay #RheumaticDiseases #NothingAboutUsWithoutUs
March 18, 2025 at 9:11 AM
nicoleschmidtvie.bsky.social
Back home from Barcelona and #EULAR2025, #patientinvolvement in #RA remains key!
squeezeproject.bsky.social SQUEEZE project @squeezeproject.bsky.social · Jun 17
How can we possibly fill the void after the end of #EULAR2025? Maybe by watching @eular.org's Kristina Chingov explain how to involve patient research partners in EU consortia during an Austrian Research Promotion Agency #FFG -led virtual coffee talk. ☕ Watch via 👉 www.youtube.com/watch?v=oyOC...
Horizon Europe – Health in Action | Patient Engagement in EU Projects
YouTube video by Horizon Europe Community Österreich
www.youtube.com
June 17, 2025 at 3:53 PM
savaslab.bsky.social
Here is my acceptance speech that I can deliver from social media

I have many folks to thank and attribute this award to ❤️❤️❤️

#NewfoundlandAndLabrador #PatientInvolvement #Cancer #AtlanticCanada 3/
November 2, 2025 at 1:58 PM
dkfz.bsky.social
Wonderful visit from 🇬🇧 patient advocate Linda Galbraith at DKFZ. We had a great exchange on international collaboration in #PatientInvolvement and look forward to continuing the dialogue! #CancerResearch #PPIE #ACED
May 13, 2025 at 9:20 AM
savaslab.bsky.social
Sadly I got sick at the airport and had to cancel my trip to receive this wonderful award ❤️💔❤️

But,

#NewfoundlandAndLabrador #PatientInvolvement #Cancer #AtlanticCanada 2/
November 2, 2025 at 1:54 PM
mike-thorpe.bsky.social
Have your say on shaping the #NHS National Cancer Plan, click on the link below to respond to the call for evidence.
#PPIE
#PatientEngagement
#PatientInvolvement
www.gov.uk/government/c...
Shaping the national cancer plan
www.gov.uk
February 6, 2025 at 11:33 AM
simonrstones.bsky.social
Proud to be representing the patient and carer (PARE) community of EULAR as Chair-Elect, alongside the current Chair and VP PARE at the March 2025 EULAR Council Meeting! #eular #patientengagement #patientinvolvement #rheumatology #rmds
March 10, 2025 at 5:09 PM
annafryxelius.bsky.social
#PatientLedResearch #Rheumatology #EULAR #RMD #PatientInvolvement #JamesLindAlliance #ResearchMatters #NorskRevmatikerforbund #PARE #HPR #EULAR2025
June 11, 2025 at 11:42 AM
drmroz.bsky.social
#Patientinvolvement in clinical trials: a paradigm shift in research | Orphanet Journal of Rare Diseases | #patientengagement Full Text ojrd.biomedcentral.com/articles/10....
Patient involvement in clinical trials: a paradigm shift in research - Orphanet Journal of Rare Diseases
ojrd.biomedcentral.com
February 13, 2025 at 5:02 AM
sammiemc.bsky.social
Fab Rehabilitation Science Research Network for COVID. fireside chat w @sunsopeningband.bsky.social on PEM /PESE = Post Exertional Neuroimmune Exhaustion.
Excellent input on research planning from @nikki-s.bsky.social & @sabrinapoirier.bsky.social in the research breakout room!
#patientinvolvement
November 21, 2025 at 6:25 PM
iamcharleneyoung.bsky.social
Student Researcher Francesca giving us #Osteosarcoma patients hope for the future with her project aims...🙏🏾🙏🏾🙏🏾

💙

#ResearchTogether
#PPIE
#PatientInvolvement
#PatientEngagement
#Researchers
#University
February 11, 2025 at 12:20 PM
sheencr.bsky.social
Really excited to share this opportunity to be part of our new patient panel who will be integral to our @exposomeimmunology.bsky.social research exploring how environmental exposures cause chronic inflammatory diseases like asthma + IBD Please do apply/ share #PatientInvolvement #Exposome
Recruiting a Patient and Public Involvement Panel for the Medical Research Council Centre of Research Excellence in Exposome Immunology | British Society for Immunology
www.immunology.org
March 25, 2026 at 5:09 PM
advocacyeu.bsky.social
🌟 Looking forward to connecting with everyone here! 📍 We are the European Patient Advocacy Institute (EPAI), empowering patients since 2017. Join us in driving change through education, collaboration & #Research. Let's strengthen #PatientAdvocacy together! 💪 #PatientInvolvement #PatientEngagement
February 12, 2025 at 5:38 PM
pickereurope.bsky.social
Join us on the 1st October at the @unibirmingham.bsky.social to celebrate this work:

www.picker.org/picker-experience-awards

#PatientSafety #PatientExperience #PatientInvolvement #PEN26

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Celebrating success in patient experience | Picker
Be part of the first and only awards programme to recognise best practice in patient experience across health and social care. Now in their 16th year, the Picker Experience Network Awards, also known ...
www.picker.org
September 17, 2026 at 8:38 AM
cancerpatientseu.bsky.social
📢 Join us in Brussels for the VOICE PM Networking Event on Meaningful Patient Involvement in Translational Personalised Medicine Research on 24-25 June!

🔗 Register here: cancerpatientseurope.org/voice-pm-net...

#VOICEPM #PatientInvolvement #PatientEngagement
June 15, 2026 at 3:34 PM
medipace.bsky.social
We’re breaking barriers to patient engagement with our pro-bono work with the Patient-Centric Sampling Interest Group (PCSIG). We've co-created a free survey to help organisations better understand patient perspectives in research. Access it now: www.pcsig.org/patientadvis...

#PatientInvolvement
PCSIG Patient Advisory Group | PCSIG
www.pcsig.org
March 12, 2025 at 11:49 AM
hemachaplin.bsky.social
Do you have #kidneydisease (or a family member with #CKD), #highbloodpressure or #diabetes? Join our Patient Involvement Group to share your views & shape our research! Please email info@kpin.org.uk if interested & mention Patient Involvement group for Education project #PPIE #PatientInvolvement
November 27, 2024 at 3:13 PM
sarahhutchinson.bsky.social
Despite advocating for greater #patientinvolvement for years, and seeing others struggle before me, I was utterly unprepared for how damaging not being heard as a service-user rep would be. I've had some great experiences but personal cost has been significant
jamestitcombe.bsky.social James Titcombe @jamestitcombe.bsky.social · Nov 17
Absolutely agree Susanna. I still suffer a huge amount as a consequence of how I was treated after co-founding a patient safety charity a few years ago. It was the absolute failure to recognise my insights & thinking came at a high personal cost & subsequent invalidation that caused lasting scars.
susannastanford.bsky.social Susanna Stanford @susannastanford.bsky.social · Nov 17
Respectfully valuing patient advocates’ contributions, ensuring they are welcomed and supported is important to help protect from compounding the harm they have already experienced. We need trauma informed research to be the norm. As @jamestitcombe.bsky.social says more guidance is needed. /4
November 17, 2024 at 10:22 PM
autopix.bsky.social
👉 Set your reminder now and join us live on YouTube!

#PiXight @autopix.bsky.social  #PatientInvolvement #Research #Innovation #Webinar #EULAR #PRP #PatientEngagement #Collaboration #IHI
November 10, 2025 at 10:01 AM
patvocates.bsky.social
📢 Hello everyone! 👋 All of us at Patvocates are excited to connect, share and grow with you here! #HelloBluesky #NewCommunity #PatientEngagement #PatientInvolvement
February 12, 2025 at 4:39 PM
uoaepi.bsky.social
🥳 We’re thrilled to welcome back Dr Elaine Wainwright as PPIE Academic Lead in the Epidemiology Group @uniofaberdeen.bsky.social!

Elaine brings 💡expertise in chronic pain, 🧠health psychology & 💬patient involvement in research 👏

#PPIE #PatientInvolvement #ChronicPain #TeamScience
April 21, 2025 at 10:52 AM
iamcharleneyoung.bsky.social
"Even the rarest conditions deserve the loudest voices and the deepest commitment to progress." ~Unknown

#RareResearch25
#RareDiseaseConference
#PatientAdvocacy
#Collaboration
#PatientInvolvement
#RareDisease
#RareGems
#RareCancers
#BionicWarrior
#IAmCharlene
April 18, 2025 at 4:35 PM
jog13.bsky.social
We're looking for people to join a #patientinvolvement group to support our @nihr.bsky.social funded mixed methods study on education and information for early-stage CKD - please get in touch if you are interested!

@penarc.bsky.social @uniofexeternews.bsky.social
hemachaplin.bsky.social Dr Hema Chaplin @hemachaplin.bsky.social · Nov 27
Do you have #kidneydisease (or a family member with #CKD), #highbloodpressure or #diabetes? Join our Patient Involvement Group to share your views & shape our research! Please email info@kpin.org.uk if interested & mention Patient Involvement group for Education project #PPIE #PatientInvolvement
November 27, 2024 at 3:46 PM