🦋Today is #WorldLupusDay! 🦋 Let's raise awareness on #SystemicLupusErythematosus #SLE #lupus #ePAGs #patientsinvolvement #EuropeanReferenceNetworks #ShareCareCure

#ERNReCONNET Strategic #Meeting: ready for #RareDiseaseDay 2023 #rarediseases #awareness #PatientsInvolvement #RareIsMany

Just published on @NatRevRheumatol! The impact of #COVID19 on #rare and complex #connective tissue #diseases: the experience of #ERNReCONNET #rarediseases #ShareCareCure #patientsinvolvement #EuropeanReferenceNetworks

#ERNReCONNET meeting: #SLE and #COVID19 #vaccines "That's the reason why ERNs were developed..." #patientsinvolvement #bestpractices for people living with #SystemicLupusErythematosus

Just published on @NatRevRheumatol! The impact of #COVID19 on #rare and complex #connective tissue #diseases: the experience of #ERNReCONNET #rarediseases #ShareCareCure #patientsinvolvement #EuropeanReferenceNetworks

Very productive day at @LupusEurope meeting in Liverpool. Patients’ involvement in @ern_reconnet . #sharecarecure #patientsinvolvement #Lupus #ePAG #Europeanreferencenetwork

1. A fruitful day's work: the WG #Patients' Partnership Kick-off meeting #PatientsInvolvement ERN ReCONNET. More than a Network.

Let’s work together. #NUHcareexcellence18 #patientexperience #patientsinvolvement #NUHPPI

Marta Mosca on #EuropeanReferenceNetworks at the II Level Master in #RareDiseases @UNI_FIRENZE #ERNs #ERNeu #patientsinvolvement

A fruitful ongoing discussion on the impact of the #ERN #integration at national level 🇮🇹 Le ERN verso l'integrazione #ShareCareCure #EuropeanReferenceNetworks #patientsinvolvement

Sjögren Europe vice-president (Mascha, on the right) and president (me, on the left) meeting in Amsterdam! More information about us will be provided soon! 10/03/2019 #sjogreneurope #sjogren #sjogrens #Sjögren #Sjogrens #patientsinvolvement

👥Sharing great ideas regarding activities involving children and young people in #clinicaltrial design and #healthresearch in today´s @eYPAGnet community call💻👥#YPAG #Pediatrics #Youngpeople #Children #PatientsInvolvement #ClinicalResearch

The report makes five recommendations to improve #patientsafety in England. “Underpinning all of these recommendations is the principle that, first and foremost, patient safety needs to be seen and truly understood from the patient’s perspective.” #PatientsInvolvement

Just published: "Clinical practice #guidelines #adherence, #knowledge and #awareness in #rare and complex connective tissue #diseases across #Europe: results from the first ERN ReCONNET #survey" #CPGs #adaptation #patientsinvolvement #ShareCareCure #ERNeu https://t.co/GEXVeClFMU

3th day #EPFCongress19 Patients as teachers. What can patients teach professionals? How can and should #patientsinvolvement shape the education and the continuous professional development of our future healthcare professionals, and what can other professional learn from patients

Today's #ERNReCONNET #workshop "Clinical challenges on the management of treatment of our #rCTDs #patients in the #COVID era" has been a very active moment for discussion with patients and HCPs. #patientsinvolvement #ShareCareCure #EuropeanReferenceNetworks #ERNeu

#ERNReCONNET at the "World Rare Disease Day in Tuscany - Raising #Awareness and Promoting Innovation for Rare Diseases" on "#ERNs from #Europe to Tuscany: Where we are and what's next" #RareDiseaseDay #PatientsInvolvement https://t.co/YVpQrMcJDd https://t.co/NOETE8RaSg

February is finally here! #PatientsInvolvement #PatientsEngagement #Pain

#Education and #Training session of #ERNReCONNET Plenary Meeting with Vanessa Smith @uzgent @maurizio_cutolo @UniGenova and @DianaMarinello #ERNeu #Patientsinvolvement #ShareCareCure

#ERNReCONNET #ePAG representatives: "We are ready to work together on all the crazy things we do together" ERN ReCONNET patient partnership: joining efforts to ensure that no one is left behind. #patientsinvolvement @eurordis @EU_Health @LPCDR82 @CoBouillot