Welcome from our CEO
Dear all,
Welcome to our July round-up!
It’s been a busy month at Alport UK. From our London Information Day on 4 July to the preparation for The International Workshop on Alport Syndrome in Budapest in September, there’s been plenty happening.
In this first edition of the newsletter, you will read about:
- research updates
- stories
- events
- fundraising
We hope you enjoy catching up on the latest news and thank you for being part of our community.
With my best regards,
Susie Gear
CEO, Alport UK
PS: click on the icons below to follow us on social media!
Research updates
New clinical trial by Eloxx
Eloxx pharmaceuticals launched the EXACT clinical trial (EL-017), which is testing a treatment for Alport syndrome patients with a nonsense mutation in COL4A3/4/5 genes.
The trial is open to people aged 12+ with Alport syndrome and a nonsense mutation, based in the United Kingdom.
To find out more or check if you may be eligible, please contact the Royal Free Hospital Renal Research Team via email: rf-tr.renalresearch@nhs.net
Stories
Kamran’s story: finding answers through early diagnosis
When six-year-old Kamran was taken to hospital with stomach pain, a routine urine test revealed something no one was expecting. That chance discovery led to an early diagnosis of Alport syndrome, giving his family the opportunity to act before symptoms progressed.
In this heartfelt story, Kamran’s mum, Zahra, shares their journey, the support they found through Alport UK, and why they’re now fundraising to help other families.
How one Facebook post changed a family’s life
When Sarah’s kidneys began to fail, her mum, Margo, hoped to donate one of her own. But because she has an Alport-related genetic variant, she was told she couldn’t.
Everything changed after Sarah came across a post in the Alport Warriors Facebook community. It led her family to ask one more question – and ultimately gave Sarah the gift of a life-changing kidney transplant.
Highlights from our London Information Day
More than 80 members of the Alport community came together in London for a day of expert talks, inspiring patient stories and meaningful connections. From the latest research updates to conversations between families, the day was filled with learning, hope and support.
Take a look back at the highlights, photos and key moments from this special event.
Join us in Budapest this September
Registration is still open for the 2026 International Workshop on Alport Syndrome, taking place in Budapest from 5–7 September. Bringing together people living with Alport, families, researchers and clinicians from around the world, the workshop is a unique opportunity to hear the latest research, share experiences and build new connections.
Find out more about the programme and secure your place today.
Take on the Great North Run
We’re delighted to have Cathy Park and Lisa Pollard joining Team Alport UK for the 2026 Great North Run!
We still have two charity places available, so if you’ve ever thought about taking on this iconic event while raising funds for people living with Alport, we’d love to hear from you.
Help us make a difference
Everything we do is made possible by people like you. Your support helps us provide trusted information, connect families, fund research and build a brighter future for people living with Alport.
