Top Tweets for #PierreRobin
Healthcare law, human rights, #EU values... it is time for Europe to facilitate access to care for #RareDisease patients.
In 2025, the #PierreRobin Europe Foundation is running a campaign of strategic litigation in the European courts. The goal is to bring about an important and long overdue change in EU law: to facilitate access to care for millions of rare disease patients all across #Europe.
Please check out their video on the campaign, and other materials which they have made available, here: https://t.co/5gG5aho0w5
@PhilippePakter @eurordis @rarediseasesint @eupatientsforum
So glad to have my @Triological thesis out and published! Really big financial impact for children that get mandibular distraction surgery when it helps avoid gastronomy tube! #mdo #pierrerobin @VUMC_Insights @VUMCDiscoveries @VUMCchildren
*This study examines costs of G-tube placement for neonates with Robin sequence undergoing mandibular distraction osteogenesis. Avoiding the G-tube could save money & improve dysphagia, benefiting families significantly. @rhbelcher @GoudySteve @pedsentmd https://t.co/a4w43CgkbK
Excited to share our new publication 🚨🚨🚨 on pre-op considerations to avoid G-tubes in kids that get mandibular distraction osteogenesis surgery! Congrats to our Vandy Cleft Team @VUMChealth @VUMCchildren #mdo #cleftstrong #pierrerobin #prs https://t.co/AEIExHiXBN
Onze leden hebben vorige week ons magazine Aanzicht in hun mailbox ontvangen!
Het thema van dit magazine is: adoptie en schisis
Foto: Pien (Instagram: Pien.kidsmodel)
Fotograaf: Tess Lantang
#schisis #pierrerobin #stickler #lotgenoten #ervaringsdeskundige #Adoptie
Schisis Nederland wenst je een gelukkig en gezond 2024!
#2024 #nieuwjaar #schisis #pierrerobin #stickler
We are so excited to welcome our new members, the International #PraderWilli Syndrome Organisation (@ipwso), the Pediatric Retinal Research Foundation, and #PierreRobin Europe! ⬇️
Sinds kort hebben we een nieuwe website!
Deze werd op de Landelijke Schisisdag 2023 feestelijk gepresenteerd.
Heb je al een kijkje genomen?
https://t.co/U7Saex5ex7
#schisis #pierrerobin #stickler #website
Hoe een kind omgaat met zijn of haar schisis is bij iedereen anders. In deze video vertellen Niels, Jin, Keano, Eila, Yulan, Daan en hun ouders daarover.
https://t.co/bTa23yLG2g
#schisis #pesten #pierrerobin #stickler
Uno trata de no ser un traumada por las cosas de la vida pero no hay cosa que me encante admirar más en las ecografías de bebés que los mentones 🫣 #pierrerobin
Fakültemiz öğretim üyesi Dr. Öğretim Üyesi Serap Titiz Yurdakul Pierre Robin sendromlu bebeğin tedavisini başarıyla gerçekleştirdi. #deudishekimligi #universitemdeu #deuagizdismerkezim #pierrerobin https://t.co/gdiWA8RtJP
We kunnen terugkijken op een geslaagde landelijke #schisis #dag! 😎 🌞 We hebben diverse activiteiten gedaan en het weer werkte (te?!) goed mee.... Nu zijn we vooral benieuwd naar jullie indrukken en verhalen! 😎
#vereniging #lotgenoten #contact #pierrerobin #stickler
Op 18 juni organiseren wij weer een landelijke dag op locatie! Deze vindt in Nieuwegein plaats. Bijgevoegd het programma.
Zien we jou dan ook?
#schisisnederland #lotgenoten #contact #schisis #pierrerobin #stickler
Son poco conocidas las malformaciones craneofaciales derivadas de algunas #EnfermedadesRaras. Son los casos, entre otros, de Síndrome #TreacherCollins o #PierreRobin. La cirujana maxilofacial Adoración Martínez habló sobre ellas en jornada sobre EE.RR.
https://t.co/dazJjyqHjh
Son poco conocidas las malformaciones craneofaciales derivadas de algunas #EnfermedadesRaras. Son los casos, entre otros, de Síndrome #TreacherCollins o #PierreRobin. La cirujana maxilofacial Adoración Martínez habló sobre ellas en jornada sobre EE.RR.
https://t.co/dazJjyqHjh
Megan and her turtle were happy to pose with Dr Walton during her care for #pierrerobin sequence. Dr Walton, one of Chicago’s #topdocs, is part of our pediatric craniofacial #plasticsurgery practice. Megan, 14, is a teen we’re glad to know. #rarediseaseday
#maladierare
La Séquence #PierreRobin touche 80 à 100 bébés/an en France 👶
Quelques mois après la naissance, il est possible de corriger cette mauvaise fermeture du palais avec une opération chirurgicale
👉Reportage au @CHURennes @Allodocteurs
#chirurgie
https://t.co/bzhnWYIBLJ
#JDR April Issue
"Here we show that conditional loss of a Mediator complex subunit protein, Med23 in mouse neural crest cells (Med23fx/fx;Wnt1-Cre), results in micrognathia, glossoptosis & #cleftpalate, mimicking the phenotype of #PierreRobin sequence."
https://t.co/s8ixGVb4P6
Dr. Chad Purnell is the guest expert on Plastic and Reconstructive Surgery #PRSJournalClub podcast. Some of the topics: #cleftpalate and #pierrerobin, conditions our @AmerCleftPalate approved team specializes in treating. https://t.co/oP29cHoYSc #medicaltwitter
We're beary thankful for patients staying safe and wearing their #mask! Mickie was born with #PierreRobin syndrome, and TWO #spine conditions. READ how Dr. Kim Hammerberg helped Mickie have a full life. https://t.co/2WqW1AFuOK
#scoliosis #kyphosis #shrinerschicago #maskup
We're beary thankful this holiday season for patients who are staying safe and wearing their #mask! Mickie was born with #PierreRobin syndrome, and TWO #spine conditions #scoliosis and #kyphosis. READ how Dr. Kim Hammerberg helped Mickie have a full life. https://t.co/2WqW1AFuOK
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