#AlportSyndrome
This is right up my #AlportSyndrome #ThinGBM alley.
To celebrate the growing #medsky / #nephsky community, I will post one silly med/kidney cartoon every day for one month! d3: acanthocyte in the making
November 13, 2024 at 12:43 PM
Podocytologists of the Bluesky world, unite! @rachellennon.bsky.social @rheaultm.bsky.social Anymore out there (yet)? #podocyte #AlportSyndrome
To celebrate the growing #medsky / #nephsky community, I will post one silly med/kidney cartoon every day for the next month! Today, say hi to this friendly podocyte!
November 12, 2024 at 8:38 PM
🧬#Alportsyndrome

The #ATHENA trial results showed:

- UACR and UPCR correlate best with eGFR decline

- identified other potential biomarkers that may serve as predictors of eGFR decline

@senefrologia.bsky.social #GTERH

👇🏻
March 8, 2025 at 10:44 PM
November 4, 2025 at 6:27 PM
For all those who left X, a copy and paste:

Congratulations, Hassan Saei! It was an honor to be on your PhD defense jury. I can't think of a better reason to go to Paris. Your work on ADTKD and #AlportSyndrome is first-rate! I look forward to seeing you at a conference in the future.
December 6, 2024 at 11:05 PM
📘 New 2024 guideline on Alport syndrome just published in NDT by ERKNet, ERA & ESPN — covering diagnosis, management & treatment.

Read the abstract: academic.oup.com/ndt/advance-...

#AlportSyndrome #Nephrology #RareDisease #Guidelines
April 8, 2025 at 10:50 AM
March 24, 2024 at 11:14 AM
Congratulations to Professor Kai at #KumamotoUniversity for bringing together the #AlportSyndrome community in Japan to advance efforts in awareness, early diagnosis and therapeutic development. I was honoured to be a small part of it.
March 31, 2025 at 1:34 PM
November 7, 2025 at 4:57 PM
I hope I can skip dialysis this time around and go straight to another transplant, but I don't have a living donor (my other two kidney transplants were from living donors). Will talk to my doctor about this next week.

Also, I cut my hair.

#alportsyndrome #kidneytransplant
November 26, 2024 at 9:39 PM
Chemical chaperone 4-phenylbutyrate treatment alleviates the kidney phenotype in a mouse model of Alport syndrome with a pathogenic variant in Col4a3

doi.org/10.1016/j.kint.2025.05.016

#MedSky #NephSky #OpenAccess #ckd #chronickidneydisease #alportsyndrome
June 9, 2025 at 11:35 AM
The AlportSyndFndn's #AlportSyndrome Research & Regulatory Workshop brought together 35 experts - including
@jeffminerphd.bsky.social - dedicated to advancing therapeutic development for this rare #genetic kidney disease. #Nephrology See more: nephrology.wustl.edu/jeffrey-mine...
Jeffrey Miner Among Leading Experts at Alport Syndrome Research & Regulatory Workshop - Division of Nephrology
Jeffrey Miner, PhD, FASN, Eduardo and Judith Slatopolsky Professor of Medicine in Nephrology at Washington University, was among the 35 workshop participants of the Alport Syndrome Research & Regulato...
nephrology.wustl.edu
August 4, 2025 at 5:58 PM
🎥 New RaDaR data on #AlportSyndrome

✅ 1175 patients
✅Key for understanding disease progression
✅ Informs future trial design

RaDaR's Danny Gale discusses the most detailed AS analysis yet.

🎥Watch the HCP Live News interview: ow.ly/xo7150WbFcY

#RareKidneyDisease
Alport Syndrome Outcomes Linked to Genotype and Proteinuria in RaDaR Study
A RaDaR analysis from ERA 2025 provides insight into predictors of disease progression, outcomes in patients with Alport syndrome.
ow.ly
July 1, 2025 at 4:00 PM
🌍 RaDaR team members presented #AlportSyndrome data at FDA headquarters in Washington DC.

Discussions focused on accelerating clinical trials using surrogate endpoints – a key step toward developing treatments for this rare kidney disease.

Read more: https://ow.ly/lKNe50XJBsj
December 19, 2025 at 10:00 AM
Thank you to Florence Nightingale for changing the path for a brighter future for nursing and to all our nurses who help create a brighter future for people living with Alport Syndrome.

#florencenightingale #renalnurses #dialysisnurses #transplantnurses #changes #alportsyndrome
May 13, 2025 at 12:35 PM
Julia Byrska presented her work on a urinary peptidomic classifier for the non-invasive diagnosis of Alport syndrome at the 2026 International Workshop on Alport Syndrome in Budapest.

Read more:

🔗 www.projectpicked.eu/news-and-eve...

#AlportSyndrome #Peptidomics #KidneyResearch #MSCA
September 8, 2026 at 9:36 AM
Congrats to Julia Byrska, who received the Cecil Alport Gold Award for Best Presentation at the 2026 International Workshop on Alport Syndrome in Budapest. 🏅

A fantastic recognition for her work on a urinary peptidomic classifier for Alport syndrome.

#AlportSyndrome #KidneyResearch #MSCA
September 9, 2026 at 8:36 AM
Doctoral Candidate Julia Byrska presented her research on urinary peptide biomarkers for the non-invasive diagnosis of Alport syndrome at the 8th Cardiovascular, Renal and Metabolic Diseases Area Meeting.

Read more:
🔗 www.projectpicked.eu/news-and-eve...

#KidneyResearch #AlportSyndrome #Biomarkers
July 28, 2026 at 8:43 AM
Alport Syndrome: A genetic disorder causing progressive kidney disease, hearing loss, and eye abnormalities due to type IV collagen mutations. March is #alportsyndrome awareness month.
alportsyndrome.org @alportuk.bsky.social
You may be rare, but you are not alone!
#rareDisease #rareDiseaseAwareness
March 18, 2025 at 2:00 PM
Big news in hearing research!

Dan Jagger has been awarded a grant for his research into hearing loss in Alport Syndrome. Shaped by real patient experiences, his work aims to improve understanding and prevention.

Stay tuned for updates!

#HearingResearch #AlportSyndrome #AlportUK
March 24, 2025 at 11:51 AM
📢 Incidental findings of autosomal dominant #AlportSyndrome in reproductive carrier screening offer a unique chance to protect kidney health early 🧬
Discover how a small step can lead to a significant impact ⬇️ #Genetics #KidneyHealth

www.nature.com/articles/s41...
From screening to strategy: Clinical implications of COL4A3/COL4A4 variants found in reproductive genetic testing - European Journal of Human Genetics
European Journal of Human Genetics - From screening to strategy: Clinical implications of COL4A3/COL4A4 variants found in reproductive genetic testing
www.nature.com
January 5, 2026 at 8:15 AM
💡 #biobank.cy

Watch a discussion of the new scientific findings and the promising prospects from the study on the treatment of a rare inherited kidney disease—#AlportSyndrome.

🔗 Watch it here: buff.ly/2qVRzgx
🔗 Read more: buff.ly/WezkYvk

🧵 2/7
Ανακάλυψη για τη θεραπεία του συνδρόμου Alport από την ομάδα του Biobank.cy & την Ιατρική Σχολή | biobank.cy Center of Excellence in Biobanking and Biomedical Research
Pavlos Ioannou PhD Cand., and Christofer Odiatis, Research Project Leader biobank.cy join the University of Cyprus channel to discuss the new scientific findings and the promising prospects from the…
buff.ly
September 18, 2025 at 7:06 AM