Have you ever wondered which is a better predictor of long-term outcomes in people with rare kidney diseases, urine protein:creatinine ratio or urine albumin:creatinine ratio? We looked in the RaDaR dataset to find out: doi.org/10.1093/ndt/...

Very pleased to see this RCT of Pegcetacoplan in #C3G and primary #ICMPGN published because it shows evidence of a transformational effect of this treatment in people with a #RareDisease. www.nejm.org/doi/full/10....

Now online in @ndt-era.bsky.social – this article by Prof Daniel Gale shows how RaDaR data are accelerating drug development for rare kidney diseases – informing NICE appraisals, regulatory endpoints & clinical trials for IgA nephropathy, FSGS, C3G & Alport syndrome. 📄: ow.ly/L9HK50XqqqT

In this new perspective article in #ASNJASN, authors detail a national system of iteration enabling bidirectional flow between clinical care and whole genome sequencing. Read more: kidney.pub/JASN0922#ASNJASN,@dannygale.bsky.social

Awesome work by @zornitza.bsky.social and collaborators showing the immediate value of WGS for newborn screening in a cohort of 1,000 Australian babies. Now we need larger, more diverse cohorts to show this approach can achieve population scale!

If you’re interested in learning about all things genetic in nephrology, come to our Renal Genomics course in London, 5-6 March 2026!

Int Society of Nephrology Glomerular Disease fellowships! Our program is not on the small ISN list but can host ISN fellows. We offer glomerular disease clinics, vasculitis clinics, genetics clinics, onconeph clinics and research opportunities. DM if interested! www.theisn.org/in-action/gr...

Thrilled to have this finally published! If you are interested in learning about the collagen IV diseases Gould syndrome and Alport syndrome, add this to your reading list. www.nature.com/articles/s41...

⚠️ The FDA has approved pegcetacoplan (Empaveli) for treating C3G and IC-MPGN. #kidneydisease #nephrology #nephsky #c3g www.docwirenews.com/post/fda-app...

The Alport Workshop in Beijing in September is looking tremendous! Agenda to be added soon, but register now at tinyurl.com/5674vckz @alportuk.bsky.social @dannygale.bsky.social @rheaultm.bsky.social @rachellennon.bsky.social‬

Proteinuria Trajectory and Disease Progression in Children and Adults with IgA Nephropathy/Vasculitis https://pubmed.ncbi.nlm.nih.gov/40208688

Treatment of patients with IgA nephropathy: a call for a new paradigm doi.org/10.1016/j.kint.2025.01.014 #KIReview #OpenAccess #MedSky #NephSky #IgAN #IgAnephropathy

As @ausgenomics.bsky.social comes to an end: what have we learned? 🇦🇺🧬 @naturemedicine.bsky.social 👉 rdcu.be/eeuAN Change is hard! Key for success: working across disciplines; jurisdictions; and all leadership levels🏆 @stephaniebest.bsky.social @iliasgoranitis.bsky.social @andrewmallett8.bsky.social

Statistician wanted! The UK National Registry of Rare Kidney Diseases (RaDaR) is looking for a statistician to join our team using patient data to unlock improvements in care for people with rare kidney diseases. If you are interested click here shortlink.is/fzNsRD or message me.

Prospective Cohort Study in #Alport Syndrome Patients under Standard Therapy - the ATHENA study www.kireports.org/article/S246...

#NephMadness 2025: Minimal Change Disease Region buff.ly/qk4LG8w Teams: - MCD Diagnosis and Pathogenesis - MCD Relapse Expert: Susan Samuel Writers: Mallory Downie & Robert Myette Execs: Ana Catalina Alvarez-Elías & @nephrosparks.bsky.social

Globally, 150+ rare kidney diseases affect 60–80 people per 100,000. Many are hereditary, with inherited kidney disease seen in 10% of adults & most children on #KRT. Yet, barriers to diagnosis & treatment persist, especially in LMICs. On #RareDiseaseDay, we call for action! #KidneyHealthMatters

Somehow missed this excellent VA of the RaDaR study that has changed hearts and minds in IgA Nephropathy, breaking the sound barrier of 1g/day of proteinuria as are standard for high risk of progression

Exciting progress in Alport research! 🎉 The Alport Research Hub, led by Prof. Rachel Lennon, is uniting experts and patients to improve diagnosis, treatment & care. Watch the video to learn all about The Alport Research Hub @rachellennon.bsky.social @kidneyresearchuk.org

🎇Our new paper in @ScienceMagazine : Kidney Multiome-Based Genetic Scorecard Reveals Convergent Coding and Regulatory Variants. @Hongbo919Liu science.org/doi/10.1126/...

Genotype-First Analysis in an Unselected Health System–Based Population and Phenotypic Severity of COL4A5 Variants. tl;dr The spectrum of kidney disease in those with COL4A5 variants is broad and under diagnosed. journals.lww.com/jasn/abstrac...

The PARASOL initiative started after the DUPLEX trial results were presented by @rheaultm.bsky.social in 2023 On #kidneycompass, Laura Mariani shares how remarkable progress can be possible in a short time when groups work together towards a common goal #FSGS www.hcplive.com/view/kidney-...

Congratulations Steph Chong and colleagues at UCL renal on this important work. www.thelancet.com/journals/ebi...

📣 Big news! Our tag-team effort on common variants in rare neurodevelopmental conditions is now out in Nature 📣 Co-first authoring with the brilliant Qinqin Huang🌟—proof that teamwork does make the dream work. 💪 www.nature.com/articles/s41...