TheRaCil Project retweetledi
TheRaCil Project
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TheRaCil Project
@TheRaCilProject
A European research consortium on Therapies for Renal Ciliopathies. Co-funded by the Horizon Europe programme and UKRI - 16 partners, coord. @InstitutImagine
European Union Katılım Ağustos 2023
191 Takip Edilen101 Takipçiler
Excellent meeting with participation of several #TheRaCil members - Albertien van Eerde, Anita Burgun & Flavia Galletti @FLAVIAZH. We support the critical need for data integration accross frontiers to accelerate precision medicine in genetic kidney diseases #renalciliopathies.
ERA - European Renal Association@ERAkidney
✨ On November 27–28, the first ERA Science Meeting took place in Barcelona, Spain 🧬 This exclusive, invitation-only event brought together leading experts to shape a roadmap for implementing precision medicine in genetic kidney diseases across Europe 📄 The meeting’s outcomes will be published soon in an ERA Journal, stay tuned!
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A great initiative in memory of our dear friend and collaborator Tess Harris 🙏
PKD Charity UK@PKDCharity
Last year, PKD Charity, and the wider kidney care community, suffered the profound loss of Tess Harris. In her honour, we are establishing the Tess Harris Fellowship Award, a fitting tribute to someone who gave so much of her time, energy and heart to advancing research and uplifting the community she championed. This Fellowship will empower researchers to make meaningful strides in PKD treatment in Tess’s name, progress we know she would have been immensely proud of. Tess was a driving force for change, a tireless advocate and a powerful voice for everyone affected by PKD. We invite you to join us in celebrating Tess’s life and legacy by contributing to her Fellowship Fund. Your support will help continue her life’s work and ensure that her dedication to improving the lives of people with PKD lives on. Although Tess may no longer be with us, she will forever be remembered in the breakthroughs she inspired, the community she nurtured and the hope she helped to create. This Christmas, we remember her, and all those who have fought, and those still fighting, for a better future for people living with PKD. ow.ly/ZZWs50XBOe9
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Flashback to our great Annual Meeting in Strasbourg 🥨amazing welcome by Prof. Hélène Dollfus & team @CRBS_Strasbourg 🙏to advisors Prof. Ronald Perrone & patient advocates @FLAVIAZH, @KerryLeeson & Sandra Lawton 🙏 theracil.eu/events/second-…
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TheRaCil Project retweetledi
💬 @PKDCharity 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/educat…
#PKDInternational
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🥳TheRaCil Publications Alert🚨Visit theracil.eu/news-and-publi… - news in cilia biology & perspectives for AI in nephrology👉KIF13B controls ciliary protein content, Rezi et al @csenge_rezi @t_soren 👉AI for diagnosis and care in rare kidney disease review, Chen et al #cilia #kidney
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🚨 Check the Cilia special issue #JCSciliaSI from @J_Cell_Sci co-edited by Lotte Pedersen and with several exciting papers by other @TheRaCilProject members - congrats @BernhardScherm1 @RoepmanLab @t_soren @johnasayer and co-authors
J Cell Science@J_Cell_Sci
Our #JCSciliaSI is complete Explore our ToC: journals.biologists.com/jcs/issue/138/… Our cover image shows tracheal epithelial cells from an air-liquid interface culture imaged using U-ExM from Oliver Mercey and Marine Brunet. journals.biologists.com/jcs/article/13…
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👉Do not miss talks by our coordinator Sophie Saunier and by @johnasayer at #KidneyWk 2025 in Houston, TX, the meeting of the @ASNKidney - 🗓️Thursday Nov 6th, 2pm, Room 310A - 💊Leading Edge of Therapeutic Development in Cystic Kidney Disease session #NPH #ciliopathies
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TheRaCil Project retweetledi
🔬 Multi-Omics: A Personalized Future for #PKD Patients
Multi-omics research is already transforming #ADPKD and #ARPKD studies.
💡 These advances bring us closer to a future where therapies are guided by each patient’s unique biological profile 👇
@TheRaCilProject
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TheRaCil Project retweetledi
📣 Parents of kids with rare/undiagnosed conditions — your experience can drive change!
Tell us what helps & what’s missing. Your answers shape better support & policies.
👉Take the #RareBarometer survey: tiny.cc/RB-MH
🌍In 25 languages
#RareDiseases #Advocacy
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TheRaCil Project retweetledi
This report highlights why RaDaR matters. Hosted by @UKKidney - RaDaR is the world’s largest rare kidney disease registry & provides the evidence base for research & policy. Continued collaboration is key to strengthening outcomes for people with rare kidney diseases.
Kidney Research UK@Kidney_Research
Our new report, looking into rare kidney diseases in the UK, has uncovered shocking statistics in diagnosis delays, inconsistent care, and long waits for new treatments, with the impact being more severe for children. Rare kidney diseases include over 150 distinct diseases that, while individually uncommon, are estimated to collectively affect around 160,000 people in the UK. Following our findings, we are calling on government to deliver faster diagnosis, ensure children can be included in clinical trials, and commit investment into research and services so families are no longer left behind. Sandra Currie OBE, chief executive of Kidney Research UK, said: “This report provides the first real insight into the significant impact of rare kidney diseases and, importantly, lays out a clear path for action. We need faster and more accurate diagnoses, smoother transitions between child and adult services, and better inclusion of children in clinical trials so they are no longer last in line for innovation.” Head to our report to see our 10 key findings and 14 recommendations: bit.ly/47Wdp5Z Do you live with or know someone living with a rare disease? We’d love to hear your experiences in the comments.
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TheRaCil Project retweetledi
🌟 Live from @TheRaCilProject Annual Meeting in Strasbourg!
PKD International is represented by our President, Flavia Galletti, PELSI Board member, ensuring the patient voice shapes research & care for #PKD. 💛
#PKDResearch #ADPKD #ARPKD
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TheRaCil Project retweetledi
🗨️“For #BlackHistoryMonth, we want to introduce culturally intelligent training across RaDaR sites—understanding cultural context is key to trust, engagement & inclusive research.” – @KateBramham
Hear more at our webinar 👉 ow.ly/BBHw50WT1mk
#InclusiveResearch
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TheRaCil Project retweetledi
🥳TheRaCil Publication Alert 🚨theracil.eu/publications/n… - 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.
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TheRaCil Project retweetledi
📣 Applications are now open! #EURORDIS Open Academy applications open today for the Medicines R&D and Scientific Innovation Schools.
🎓 80 fully funded spots via #ERDERA
🧪 Hands-on sessions
🤝 Network with advocates & researchers
🔗 loom.ly/oK6lwVI #RareDiseases
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TheRaCil Project retweetledi
🩺 All kidney disease is serious, placing a heavy burden on patients, families, and the NHS. 💜 Polycystic kidney disease (PKD) has its own distinct challenges, and better understanding can lead to earlier diagnosis, improved care, and stronger research.
🔄 Repost to spread awareness!
bit.ly/AboutPKD
@kidneycareuk @Kidney_Research @NKF_UK @KidneyWales @UKKidney @PophamKidney
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🥳TheRaCil Publication Alert🚨 Visit theracil.eu/news-and-publi… 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
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We have an open #ERC funded PhD position to work on #cilia #mitochondria #PKD and #matabolism
Deadline July 7th. Look forward to welcoming a talented PhD student to our lab in beautiful Milan
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TheRaCil Project retweetledi
