Top Tweets for #ERKNET
Summary of great streds achieved by @EKHA_EU and @RVanholder
@ERAkidney @ISNkidneycare
#ERKNET #ESPN #ESOT #DutchKF @EDTNAERCA @EKPFpatients
#Resolution4Rare has officially been adopted at the 78th WHA
The draft decision proposed by 21 countries including #Egypt
This cements #rarediseases as a priority on the global #health agenda
@RareDiseases @CystinosisCRN @OHFTweet
#JORD
#ERKNet
https://t.co/ZuRQf2webw
@MuellerRom, medical doctor and researcher at the University of Cologne, is attending the #ERKNet Meeting.
Müller highlights how collaboration and unified scientific and medical approaches are essential to helping people, especially those affected by rare diseases 👇
Good morning from Leuven 🇧🇪, where we're attending the 9th Annual #ERKNet Meeting these days! 🧬
🙌 With our President @FLAVIAZH, we’re joined by @uwekorst, co-founder and Board Member of PKD International.
#ERKNet2025 #PKDInternational #RareDiseases #KidneyHealth
🌍✨ Live from the #ERKNet Annual Meeting
🎉 The event kicked off this morning in Leuven, Belgium!
🧑🔬👥 Our President, @FLAVIAZH will be attending until Wednesday, May 21st, alongside scientists from across Europe and patient representatives.
#PKDInternational #erknetmeeting
Atypical HUS & discontinuing treatment with a #complement inhibitor, some new data. https://t.co/L5wiG3MRnM N= 238 #aHUS patients enrolled from 24 EU countries, #ERKnet article on real-world C5 inhibitor use & its impact on patient outcomes.
These #guidelines represent a true collaborative effort of various stakeholders including a professional #disabled people’s organisation (@ifsbh) from the beginning of the guideline development process @Uroweb @espu @ERN_eUROGEN @ERNIthaca #erknet
Protecting bladder & kidney health is vital in managing spinal dysraphism.
The new guidelines provide a roadmap for:
🩺 Proactive urological evaluations
📊 Standardised protocols
📈 Improved outcomes
🌟 Start here: https://t.co/iGhc5aCOe3
#PediatricHealth
@EuRefNetwork interesting abstract session at the annual meeting of #ERKnet on clinical data in rare diseases. In patients with HNF1beta deletion there is a lowzr risk of renal function deterioration unless you only have one kidney
👉Présentation d'un des meilleurs abstracts sélectionnés par Erknet, celui du centre de Toulouse présenté par Joost Schanstra 🙂
@EuRefNetwork #ERKNet #RareKidneyDiseases #EuropeanNetwork #conference2023
Retrouvez l'intégralité de notre journée annuelle du 8 octobre 2022 à Bordeaux.
#maladiesrares #génétiques #maladiesinvisibles #renaldisease #maladiesrenales #PEDIATRIE #PKD #PKR #Alport
#grossesse #medecinegenomique #ERKNet #parlerdesamaladie
https://t.co/K0uwIjYLuE
At #ERKNet #Pediatric #Transplantation WG / CERTAIN Nephropathology #Workshop in Rotterdam Dr. Marian Clahsen @ClahsenMarian answered questions from her enthusiastic peers about the nanoString Human Organ Transplant 770 Genes panel developed with a global BANFF related consortium
The first joint meeting of #EndoERN, #BondERN & #ERKnet will be held on the 8th of October 2019 in Padua, Italy about Disorders of phosphate imbalance: a dysregulation of the FGF23 endocrine system. Click here for more information https://t.co/MbsYMcLHtx #EuropeanReferenceNetwork
#ERKnet meeting of patient representatives started! Great to exchange news and find out where we stand! Working groups with experts ready to start tomorrow #kidney #rarediseases
Very successful CME: “ what’s new in rare kidney diseases?” at #ERAEDTA18 in Copenhagen #ERKnet #WGIKD
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