@silvia-aps.bsky.social
In Ljubljana attending the ERN ReCONNET
#Transition training workshop! Looking forward to 2 days of exchanges and brainstorming together. Thank you to
Drs. Tadej Avcin and Mojca Zajc for the invitation π
In Munich π©πͺ today with the @eular.org #PARE committee, working already on topics like the November Conference or 2026 EULAR Congress!
12.07.2025 13:03 β π 1 π 1 π¬ 0 π 0
#EULAR2025 #PARE #Highlights:
Takeaway messages:
ππΌ Ask and listen!
ππΌ Start the conversation!
#EULAR2025 #PARE #Highlights:
EULAR PARE Posters:
βπΌ47 Posters
π3% of Posters
π€3 Poster Tours
#EULAR2025 #PARE #Highlights:
#EMEUNET Meets PARE "Speed-dating" Event
ππΌ From patient's perspective, identify key research priorities and future directions.
#EULAR2025 #PARE #Highlights:
Meet the Experts:
ππΌβCollaborative Research: Insights From Researchers on Patient Partnershipsβ by Martin J. Stevens #notokenism
ππΌβTogether on the Journey: Child and Family Involvement in Rheumatology Transitionβ by Klaire Connor
#EULAR2025 #PARE #Highlights:
Al in medicine: Your future doctor and researcher, chaired by Michael Poelzl and Corinna Elling-Audersch
#EULAR2025 #PARE #Highlights:
The Sleep Struggle: Navigating Fatigue in RMDs, chaired by @drminidey.bsky.social and Marcos SΓ©neca
#EULAR2025 #PARE #Highlights:
PARE Abstract Session: From Abstract to Concrete: PARE Perspectives, Preferences, and Expectations in RMDs. Chaired by Caroline Kirsten and Kyriaki Spanidou.
The #EdgarStene prize βTangible Memoryβ by Yvonne Balvers was presented: www.eular.org/pare-stene-p...
#EULAR2025 #PARE #Highlights:
Let's talk about relationships - conception to birth, chaired by Jeanette Andersen and Peter Boyd
#EULAR2025 #PARE #Highlights:
Breaking the silence on mental health and inflammation, chaired by Peter BΓΆhm and Jeanette Andersen
#EULAR2025 #PARE #Highlights: Fishbowl session - From exclusion to empowerment: Engaging marginalised groups, chaired beautifully by @simonrstones.bsky.social
14.06.2025 11:53 β π 1 π 1 π¬ 1 π 0
Michael #Highlights #LupusGPT developed by @lupuseurope.bsky.social, a new AI tool aimed for patients, who just won the PFMD βMade with Patientsβ award. Congratulations! π₯³
Find it here: lupusgpt.org
First session in #Highlights : Transforming Healthcare: Navigating New Technologies, chaired by Diederik De Cock and Kyriaki Spanidou
#EULAR2025 #PARE
Michael starts by summarising the contribution of the #PARE community to #EULAR2025
14.06.2025 11:41 β π 1 π 0 π¬ 1 π 0
Very happy to see again #PARE highlights in the closing session of #EULAR2025.
Michael Poelzl presented the #Highlights of the Patient and joint sessions presented by Peter Boyd, a π§΅
Wonderful to hear from our @eular.org 2025 Edgar Stene Prize winner, Yvonne Balvers, who focused on the challenges of everyday activities that able bodied individuals may dismiss, and the persistence of trauma from childhood-onset RMDs into adulthood #eular2025
13.06.2025 08:44 β π 6 π 2 π¬ 0 π 0
Fantastic to see Sladjana, a STRATA-FIT patient research partner, presenting about the project and the evaluation of PRP involvement - partnership, communication, and support are critical #eular2025
13.06.2025 08:48 β π 5 π 2 π¬ 0 π 0
Day 3 of #EULAR2025!
π΄ Weβll discuss all things related to sleep & fatigue in this fascinating #PARE session
π C3
π°οΈ 15:45-17:00
ποΈ Today!
ππΌ See you there!
The disconnect between patient and HCP priorities in Sjogrenβs Disease endpoint priorities, specifically for pain, fatigue, and QoL is evident #eular2025
13.06.2025 08:58 β π 5 π 2 π¬ 0 π 0
Co-creation in practice: creating new clinical endpoints for primary Sjogrenβs Disease between patient organisations, healthcare professionals, and industry professionals #eular2025
13.06.2025 08:55 β π 4 π 1 π¬ 0 π 0
Support requests for patient organisations regarding roll-out of electronic health records⦠again highlights the need for integrated collaborative approaches between healthcare providers/payers and patient organisations #eular2025
13.06.2025 09:39 β π 5 π 2 π¬ 0 π 0
At the #EULAR2025 #PARE Poster tour, full room!
13.06.2025 07:46 β π 3 π 1 π¬ 1 π 0
Daniel Aletaha, President of EULAR, always knows how to make an entrance! #EULAR2025 is officially underway! π @eular.org
11.06.2025 11:05 β π 2 π 1 π¬ 0 π 0
Happy to be at #EULAR2025 in Barcelona!
11.06.2025 11:29 β π 4 π 0 π¬ 1 π 0
IMPACT Trial
Certolizumab in high-risk pregnancies (APS + LAC):
β’ Complications: β from 80% to 20%
β’ Gestational age: β from 24 to 36.5 weeks
β’ Live births: β from 38% to 93%
Huge congratulations to Jane Salmon & team β truly transformative results!
π€Missed any #RheumaPreg25 sessions?
No worries! Join the highlights webinar on May 26. Contact @karenschreiber.bsky.social or @lauraandreoli.bsky.social to join the #ReHFaP mailing list π©
Third and last day of #RheumaPreg25!
10.05.2025 07:39 β π 0 π 0 π¬ 0 π 0
Karen finishes with a call for action:
We need more interventional studies in #oAPS!
#RheumaPreg25 #APS
π¬ #HYPATIA Trial Update: #APS Pregnancy Research
- Randomized controlled trial
- Hydroxychloroquine focus
- 328 women to be enrolled
- Multi-country collaboration
- Targeting women before pregnancy
To find out more: bepartofresearch.nihr.ac.uk/trial-detail...
#RheumaPreg25
