congratulations to all the team ! #ERNeu

Prof Jondeau guillaume, #VASCERN coordinator, at #European Days of the #French Society of #Cardiology speaking about #aortic risk in #MarfanSyndrome! + earlier today on #monitoring of aortic dilation in #pregnant women w/ #cardiovascular #disease! cardio-online 🫀 #ERNeu assomarfans #HTAD

Réunion du 1 er conseil scientifique de la cohorte ComPare Marfan , mise en place prochainement , avec assomarfans Jondeau guillaume Milleron Olivier Filière FAVA-Multi ComPaRe, Communauté de Patients pour la Recherche communauté de patients et plateforme participative pour accélérer la recherche. Incitez les patients à participer !

Découvrez la 43ème newsletter de la filière ! Bonne lecture ! bit.ly/3aUUxnT

✌ February is #MarfanSyndrome #awareness month! ❤ So what better time to share again this great #PoK #video by @judbacke (#HTAD WG Chair) ➡ #Marfan Syndrome - #Diagnosis youtu.be/w-rJbF4nnbQ via YouTube #MarfanVictoryChallenge #ERNeu #RareDiseases Jondeau guillaume Leema_Robert

#VASCERN #newsletter is out! ☺🙌 #upcoming events (#RareDiseaseDay), new #AffiliatedPartner 🇸🇪+🇮🇹#translations of #patientpathways, 2 new #patientadvocates join #ePAG for #PPL, The_lympha #VASCERNSpotlights #HTAD #Research news+ more! vascern.eu/?na=archive&em… #ERNeu EU One Health

Journée Internationale des Maladies Rares 2020 : demandez le programme ! favamulti.fr/jimr-2020-dema…

The VASCERN #coordination team would like to remind you that Rare Disease Day is only 10 days away! 👐 Share the #infographics available here: rarediseaseday.org/downloads, 📣#spreadtheword and #raiseawareness for #RareDiseases Feb 29th!💪❤ #ERNeu #ShareCareCure Jondeau guillaume EU One Health

Happy 3 year #anniversary #EuropeanReferenceNetworks! 🎉🎉 How far we have come since the official launch - March 9th 2017 in Vilnius! 🙌 Here's to continuing 2 #ShareCareCure and improving the lives of #RareDisease #patients! #ERNeu Jondeau guillaume #throwback #collaboration #memories

The #HHT WG has just published a new #positionstatement on #cerebral #screening in adults + children w/ #hereditary haemorrhagic telangiectasia in the OrphanetJournal at BMC! ➡ vascern.eu/new-position-p… #ERNeu #AVM #cAVM #patientempowerment HHT Onlus HHT España HHT Sverige @DupuisSophie2

What are you waiting for? Register now for the International #E3Summit for access to nearly 70 presentations (in 6 languages) w/ #Marfan #LoeysDietz and #vEDS experts (including #VASCERN #HTAD and #MSA WG members)! #ERNeu @judbacke EURORDIS-Rare Diseases Europe Association Belge du Syndrome de Marfan, ABSM asbl Orphanet @EJPRareDiseases

Who watched yesterday's #E3Summit20 session-After #Cardiac #Surgery Care + #Management? Lots of Q&As + great example of #collaboration between #patient advocates and #healthcare professionals! You can still register here➡lnkd.in/e52dRYZ #ERNeu #patientinvolvement #aorta

#VASCERNDays2021 is just 3 weeks away!😃Looking forward to #meeting again w/our #healthcare professionals, #patientadvocates #ePAG + invited #stakeholders in #Paris! Program here: vascern.eu/home/upcoming-… #ERNeu Jondeau guillaume @judbacke Miikka. Vikkula @leoschultzekool @EJPRareDiseases