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TheRaCil Project @theracilproject.bsky.social · 23/09/2026

Thanks @cilib.bsky.social Bernhard Schermer, Lena Ebert & team for great Annual Meeting at @cecad.bsky.social last week 🍻 Intense discussions with precious feedback from our advisors Prof. Ronald Perrone, @flaviagalletti.bsky.social, Tatjana Kordic Aguiar, Kerry Leeson and Fiona Copeland 🙏

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TheRaCil Project @theracilproject.bsky.social · 02/09/2026

Rare-disease specific comprehensive training programmes for patient advocates 💥

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Reposted by TheRaCil Project

EuroCilia2027 @eurocilia.bsky.social · 21/01/2026

𝗠𝗲𝗲𝘁 𝗼𝘂𝗿 𝗸𝗲𝘆𝗻𝗼𝘁𝗲 𝘀𝗽𝗲𝗮𝗸𝗲𝗿𝘀 𝗳𝗼𝗿 #𝗖𝗶𝗹𝗶𝗮𝟮𝟬𝟮𝟳! We are grateful for their participation and look forward to welcoming the cilia community on 8-12, March 2027. Wishing you all a happy and inspiring 2026! 🎉 #Cilia #Milan

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TheRaCil Project @theracilproject.bsky.social · 23/12/2025

Excellent meeting with participation of several #TheRaCil members - Albertien van Eerde, Anita Burgun & Flavia Galletti @flaviagalletti.bsky.social . We support the critical need for data integration accross frontiers to accelerate precision medicine in genetic kidney diseases #renalciliopathies.

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TheRaCil Project @theracilproject.bsky.social · 05/12/2025

Flashback to our great Annual Meeting in Strasbourg 🥨 and the amazing welcome by Prof. Hélène Dollfus & team at the CRBS @inserm.fr @unistra.fr 🙏 to advisors Prof. Ronald Perrone & patient advocates @flaviagalletti.bsky.social, Kerry Leeson & Sandra Lawton 🙏 theracil.eu/events/secon...

theracil.eu

Second TheRaCil Annual Meeting in Strasbourg - TheRaCil

Our second Annual Meeting took place on September 22nd-23rd, 2025 in Strasbourg. We received a very warm welcome from Prof. Hélène Dollfus and her team at

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Reposted by TheRaCil Project

PKD International @pkdinternational.bsky.social · 07/11/2025

💬 Polycystic Kidney Disease (PKD) Charity UK offers free educational events, both in-person and online, open to people living with #ADPKD and #ARPKD, their families, and caregivers. 🔗 Discover upcoming events and get involved → pkdcharity.org.uk/support/educational-events #PKDInternational

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TheRaCil Project @theracilproject.bsky.social · 10/11/2025

🥳TheRaCil Publications Alert🚨Visit theracil.eu/news-and-pub... - cilia biology & perspectives for AI in nephrology👉KIF13B controls ciliary protein content, Rezi et al @lottepedersen.bsky.social 👉AI for diagnosis and care in rare kidney disease review, Chen et al @knebel.bsky.social #cilia #kidney

theracil.eu

News and Publications - TheRaCil

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TheRaCil Project @theracilproject.bsky.social · 06/11/2025

💥 Check the Cilia special issue #JCSciliaSI from @jcellsci.bsky.social co-edited by @lottepedersen.bsky.social and with several exciting papers by other @theracilproject.bsky.social members - congrats Bernhard Schermer @cilib.bsky.social Ronald Roepman Soren Christensen John Sayer and co-authors 💥

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TheRaCil Project @theracilproject.bsky.social · 05/11/2025

👉Do not miss talks by our coordinator Sophie Saunier and by John Sayer at #KidneyWk 2025 in Houston, TX, the meeting of the @asnkidney.bsky.social - 📅Thursday Nov 6th, 2pm, Room310A - 💊Leading Edge of Therapeutic Development in Cystic Kidney Disease session #NPH #ciliopathies @hkd-l.bsky.social

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Reposted by TheRaCil Project

PKD International @pkdinternational.bsky.social · 23/09/2025

🌟 Live from @theracilproject.bsky.social Annual Meeting in Strasbourg! PKD International is represented by our President, @flaviagalletti.bsky.social, PELSI Board member, ensuring the patient voice shapes research & care for #PKD. 💛 #PKDResearch #ADPKD #ARPKD

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TheRaCil Project @theracilproject.bsky.social · 15/09/2025

🥳TheRaCil Publication Alert 🚨 theracil.eu/publications... - Dahmer-Heath et al highlight need to develop nephronophthisis-specific tools for collecting patient-reported outcomes. Including patients' and families' perspectives in our research is a critical goal we pursue in TheRaCil.

theracil.eu

Systematic review of outcomes reported in clinical research on nephronophthisis: how do they align with SONG Kids priorities? - TheRaCil

Dahmer-Heath, Optenhövel, Hechler et al, Pediatric Nephrology, August 2025.

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TheRaCil Project @theracilproject.bsky.social · 24/06/2025

🥳TheRaCil Publication Alert🚨 Visit theracil.eu/news-and-pub... for the latest findings on #ARPKD by our teams: predictive risk score at the age of 2 months, urinary peptide signatures and perspectives on polycystic kidney diseases in children. #cilia #kidney #kids

theracil.eu

News and Publications - TheRaCil

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TheRaCil Project @theracilproject.bsky.social · 07/05/2025

Recent article from TheRaCil published in Kidney International Reports by Alice Tata, Guillaume Rocha, Sophie Saunier, Alexandre Benmerah and their colleagues from @institutimagine.bsky.social and collaborators. #cilia #ciliopathies #kidney

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