UKKA's RaDaR, top rare kidney disease registry, shows the critical need for more knowledge & treatments.

With significant impacts on kidney failure, a new study for #WorldKidneyDay urges focus on these diseases for improved outcomes:
📖 bit.ly/4chjedE

In The Lancet, important paper from RaDaR on outcomes & differences for those with rare #kidneydiseases compared to general pop. of chronic kidney disease patients.
thelancet.com/journals/lance… Great collaborative effort! Kidney Research UK Complement Kidney TMA UK The UK Kidney Association Kidney Care UK

Beating #KidneyFailure needs #RareDisease cures. @RenalRaDaR data out today reveals a staggering 28x higher 5-year kidney failure risk in 28k people with #RareKidney diseases c/w 2.8 million with #CKD . Trajectories in 28 diseases included for reference tinyurl.com/yvybsvx2

🌟 #RareDiseaseDay is all about amplifying the voices of the ‘1 in 17’ people affected by a rare disease.

There are 6000+ rare diseases that are chronic, progressive, disabling & frequently life threatening. For most there's NO cure & treatments are limited.

#ShareYourColours

It's fitting to announce on #RareDiseaseDay that a new genetic test is available for anyone of African, Brazilian or Caribbean ancestry who is considering donating a kidney.

Testing for the APOL1 gene can now be ordered via our Lab. Info👉bit.ly/3UYJsvj

#ThinkGenomics

Join us in raising awareness for #RareDiseaseDay !

Rare kidney diseases comprise over 150 conditions. Patients often face misdiagnosis, treatment inequalities and lack of biomarkers for monitoring disease progression.

#WorldKidneyDay #KidneyHealthforAll

Rare Disease Day

Delighted to see RaDaR data from patients with IgA nephropathy contributing to understanding of a rare kidney disease - well done team RaDaR!

Huge congrats to our @renalradar team who have had their IgA Nephropathy paper chosen as a CJASN Editors’ Choice Article!

It is recognised for exemplifying the highest potential to inform future research, change clinical practice or influence policy: bit.ly/CJASNEditorsCh…

An incredible 2 days of learning at RSM frontiers in glomerulonephritis.

Highlights include exceptional rare disease data from the fantastic Prof Danny Gale

And our most recent lab member, Dr Sherry Masoud, a renal registrar, who is just starting her Phd: “Harnessing the untapped diagnostic and prognostic power of renal histopathology within the National Registry or Rare Kidney Diseases (RaDaR)”
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Meanwhile over at at RaDaR:
David Pitcher, a statistician and Dr Katie Wong, a renal registrar, are developing ways to use a rare disease registry as research tool.
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Make your mark in the UK #kidney community by submitting your abstracts to #UKKW2024 . Engage with experts, exchange ideas & contribute to the future of kidney health.

⏰ Tomorrow is the final deadline! ⏳ Submit now ⬇️

📝 bit.ly/3QvUg0a

There's still time left to register for our Industry Day! ⏳

Free to attend - a great way to learn about what we do at the UKKA, our strategic aims & how you can support us.

Connect with our experts & learn about projects. 🤝
Reserve your space now: bit.ly/3OUPcSi

More RaDaR Research: Long term outcomes in IgA nephropathy (Pitcher et al Clinical Journal of the American Society of Nephrology, 2023; pubmed.ncbi.nlm.nih.gov/37055195/

New RaDaR Research! Distribution of epidemiology and clinical characteristics of RaDaR participants Pre-print reporting Wong et al MedRxiv, 2023; (medrxiv.org/content/10.110…)

New preprint by Katie Wong, David Pitcher and colleagues reporting recruitment to the UK's @RenalRaDaR. For long-term outcome data in 20 rare diseases come to @ASNkidney #KidneyWeek2023 in Philadelphia! Thanks to The UK Kidney Association Kidney Research UK Kidney Care UK Medical Research Council PKD Charity UK

Former @renalradar RDG member for #aHUS member Dr Paul Warwicker Paweł Warwicker recalls the events and challenges of the study team which found and reported the first genetic cause of #aHUS with a surprise update Prof Danny Gale sandra currie Tess Harris ((in need of another kidney sadly)) ahusallianceaction.org/the-early-days…

📢 Passionate about kidney health & education?
Join the UK Kidney Week Programme Committee!

Shape a cornerstone event & play a role in:
✍️ Programme development
🗣️ Speaker selection
🤝 Session development
🔷 & more!

Application deadline Sept 22nd 🗓️
➡️ bit.ly/3sTnder

Ready to make a meaningful impact in kidney care? 🌐 Don't miss our UKKA Corporate Day on Nov 13, 2023!

Engage with industry leaders, learn about initiatives from the UKRR & RaDaR & much more.

Read the programme & register for free now:
👉 bit.ly/3OUPcSi

Do you want to develop specific expertise in #histological analyses of rare #renal disease cohorts?

We’re hiring a Renal/Pathology Research Fellow – a unique 3-year secondment.

📅Closing 25th August

More info & to apply 👇bit.ly/3j2rvvh

Prof Danny Gale RaDaR