An incredibly powerful talk by Susie Gear Alport UK on patient involvement with #Alport researchers WTCCMR ASMB #BasementMembraneWorkshop

The University of Sydney & KidGen invite you to participate in an interview study which seeks to understand the experiences of women with Alport syndrome along their journey.
The interview will take about 45 mins.
Visit kidgen.org/patients or email [email protected]

Watch Ryan talk about living with Alport Syndrome, and his experience taking part in a clinical trial: youtube.com/watch?v=67w3zY…

A few snaps by Yiangos Photography of my time in Cyprus working with Pippa Prangley for Alport UK
Such a forward thinking charity gathering scientists, doctors, pharmaceuticals and patients all together to share experience and expertise and to hire artists to help visualise it!

New grant success 🎉 Dr Kenton, and team awarded at the £170,000 grant University of Nottingham Biodiscovery Institute to investigate how pregnancy impacts kidney health in people with Alport syndrome.

Lorna Milne EVIL Matt Hall Merry Lab

Full article below 👇

bit.ly/43CSmRx

Amazing trainee session yesterday on Alport’s Rachel Lennon Alport UK surprise nugget for me was incidence of single heterozygotes in COL4A3 and COL4A4 is 1 in 100. Much higher than I thought! BAPN #BAPN2024

This #AlportWorkshop shows how rapidly drug development has moved forward in this space
At the 1st workshop 10yrs ago, they were no treatments known to be efficacious & no industry partners present
Real & ongoing progress from the Alport community is definitely fuelling this

New video, telling the story of Ryan Wicks' encounter with Alport Syndrome, premiered today at the #AlportWorkshop
youtu.be/67w3zY-c0Zk

Great to hear Regeneron talk about successfully using gene therapy in patients with hearing loss classic.clinicaltrials.gov/ct2/show/study… at #Alport Workshop
Alport experts have been progressing gene therapy for many years so hope for gene treatments in #Alport should be considered real

Exciting and comprehensive overview of existing & emerging treatment strategies this morning. From RAAS inhibition to gene therapy
#AlportWorkshop

A beautifully neat slide explaining the twin difficulties with treating Alport Syndrome using gene therapy from Yupeng Cheng. #AlportWorkshop

A fairly riotous #AlportWorkshop gala dinner 😂

Today's afternoon session has covered the ear and eye and pregnancy features of Alport Syndrome; clinical points like what to tell patients with a new diagnosis, who to test in general nephrology practice, and guidance for management #AlportWorkshop

Such a fascinating and useful talk #AlportWorkshop

Stimulating morning session touching on basement membrane biology, novel avenues to disease treatment, and science hot from the lab bench
A lot of hope for the future
#AlportWorkshop