Top Tweets for #cutislaxa
Dave Jacob, fondateur de ThinkGenetic, partage son errance de diagnostic et révèle son combat contre la #CutisLaxa, une maladie rare qui a bouleversé sa vie.
Écoutez son témoignage ➡ https://t.co/ALjW4CS91K
cc Cutis Laxa Internationale
#MaladiesRares #MaladieDePeau
@OGdukeneurosurg Dx: #CutisLaxa. A rare connective tissue disorder characterized by loose, sagging, and inelastic skin, which can be caused by genetic mutations or acquired factors.
Deze aflevering van ‘Jurre Ontmoet’ met Lien heeft me echt geraakt. Het is zo belangrijk om te laten zien dat mensen met een zeldzame aandoening niet anders zijn dan anderen en net zo goed van het leven willen genieten.
#JeZalHetMaarHebben #JZHMH #Cutislaxa #JurreGeluk
#Lien
❤️‼️Une belle émission encore aujourd'hui dans #cca avec des invitées passionnantes qui parlent de leur vie atypique #handicap #maladie #parkinson #CutisLaxa @FranceParkinson @CaCommenceAuj @FaustineFB #genetique ❤️‼️
So proud of you @rachmadiandaffa yang selalu ceria dan tidak menjadikan kekurangannya untuk bersedih. Yang ada Daffa malah bikin kita semua ketawa! 🥰
Langsung nonton video nya di YT Cameo yuk, link di Bio 🙌🏻
#cameoproject #ceritatentang #rachmadiandaffa #cutislaxa
The subjects of some podcasts are rarer than others and this podcast on #cutislaxa in #CDG is one of our more niche (in an already narrow niche). Thankfully @BZirnsak was on hand to keep it all simple.
It's new #podcast Friday, check out our latest offering, discussing #cutislaxa with Dr Uwe Kornak and @BZirnsak #ATP6V1A
Apple: https://t.co/NnDRhRA5ba
Soundcloud: https://t.co/j2C5EzyS1l
Spotify: https://t.co/cQA66I1t6a
Google: https://t.co/gl5k2ZcnQI
#scicomm
The podcast play count is about to hit 17,000. 43 episodes to date, discussing #cutislaxa to #organoids and #alkaptonuria to the #ureacycle with plenty of #CDG #genetics #screening #ALD and more in between. Do you have a favourite episode? #podcast
The JIMD Podcast is a fortnightly podcast intended to bring you insights from the world of IMD.
Soundcloud: https://t.co/U7HscsYHRC
Apple: https://t.co/getLP2mYTo
Spotify: https://t.co/uhlXnX3cbj
Google: https://t.co/453CiRR967
Or search for 'JIMD Podcasts' in google.
Continuing the transforming growth factor β (TGFβ)
theme with from Lore Pottie @ResearchUGent
LTBP1 causes AR #CutisLaxa syndrome with skeletal phenotype (#craniosynostosis, short stature, brachydactyly). Zebrafish show ectopic ossification
#ESHG2021
https://t.co/SqNaMhJwMp
📹L'association Cutis Laxa international nous présente sa 4e vidéo sur la chaîne YouTube d'@ewenlife
Impact de la pathologie à l'âge adulte ⏬
https://t.co/m0VlkUouyD
#CutisLaxa
Nouvelle vidéo de l'association Cutis Laxa International sur la chaîne YT de @ewenlife
On y parle annonce du #diagnostic ⏬
https://t.co/aGM3NiHdXd
#CutisLaxa
#TuAyoudas con TVN Noticias @tvnnoticias @kelynethperez a los hermanos Zaldívar quienes padecen de #CutisLaxa #EnfermedadesRaras son de Curundú. Nuestra meta son B/.3,500.00. Con tu donación se le mejorará la calidad (mejoraremos su vivienda). #NoticiasTVN
L'association Cutis Laxa Internationale vous propose une série de 8 vidéos explicatives sur la maladie ! 1er épisode : explications et formes de la maladie ⏬
https://t.co/lK2OeisAWR via @ewenlife
#cutisLaxa
It's new #podcast Friday, check out our latest offering, discussing #cutislaxa with Dr Uwe Kornak and @BZirnsak #ATP6V1A
Apple: https://t.co/NnDRhRA5ba
Soundcloud: https://t.co/j2C5EzyS1l
Spotify: https://t.co/cQA66I1t6a
Google: https://t.co/gl5k2ZcnQI
#scicomm
To find out more about her research 👉https://t.co/0TvSTbZgYO, keep your eyes peeled for her lab website when it’s here!
Interested in #CutisLaxa? Check out https://t.co/6iASe2rdPd
You can also find more about thoracic aortic aneurysms at @JRFromtheHeart https://t.co/LITnBLQ17G
#RareDisease Meet the Member Special! Please meet Dr Carmen Halabi @WUSTLPeds @WUSTLmed, she studies the role of #fibulin4, lysyl oxidase #LOX, and #ElasticFibers in #CutisLaxa and thoracic aortic aneurysms #TAA. #WomenInSTEM #ECMatrixIsEverywhere
While Nathan was sleeping I was able to mop the floors and clean out living room. Now it’s time to wake up my wife. Shift change. #DailyRoutine #cutislaxa #specialneeds #baby
My wife was caring for Nathan when suddenly It hit me. We have been doing this for so long that this has become our lives now. Sitting on this couch 24/7. how much longer will we do this, how long till we get answers? What would you do? #helpbabynathan #cutislaxatype3 #cutislaxa
I just have to share this picture with all of you, it’s just too precious. Nathan Update: had one seizure last night, his body was jerking a bit. We see his surgeon today. Remember you ARE Auspicious 🙏🏼❤️ #TheAuspiciousFamily #cutislaxa #ALDH18A1 #specialneeds #family
Today Nathan turned 11 months, he’s slowly growing and defying all the odds. Please allow Nathan to teach you and inspire you, no matter how hard things get you have to keep trying and never give up. #TheAuspiciousFamily #HelpBabyNathan #CutisLaxa #ALDH18A1 #mysuperhero
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