Welcome from our CEO
Dear all,
Welcome to Alport UK’s August round-up!
Much of our work this month has focused on preparing for the 2026 International Workshop on Alport Syndrome in Budapest, taking place next week. We’ve now reached 250 registrations, making this our biggest Workshop yet!
We hope you enjoy catching up on the latest news and thank you for being part of Alport UK’s community.
Have a great September, and I look forward to seeing some of you in Budapest!
Susie
PS: click on the icons below to follow us on social media!
Support
The Alport team at the British Transplant Games
From 6 to 9 August, members of the Alport community came together in Sheffield for a fantastic weekend at the British Transplant Games, competing, supporting one another and celebrating their achievements.
The weekend also included the first informal gathering linked to our new Nottingham area Social Hub, creating another opportunity for people living with Alport and their families to meet and connect.
The Hub has been made possible thanks to funding from The National Lottery Community Fund.
How workplaces are making a difference for Alport UK
Did you know your workplace could help support Alport UK?
Businesses are already finding different ways to get involved. Allsop is currently raising funds for Alport UK, while Mills & Reeve has chosen us as one of its charities to support in 2026.
Whether through a fundraising challenge, a charity partnership, matched giving or another idea, support from workplaces can make a real difference to our work and to people living with Alport.
Could your workplace get involved too?
📩 Get in touch with us at fundraising@alportuk.org to start a conversation.
Information
Meet the people behind Alport UK
Over the past few weeks, we’ve been introducing the people who help guide Alport UK and our work. Our Meet our Trustees series shares their backgrounds, expertise and personal connections to the Alport community.
So far we have introduced you to:
Research
Could your child help Alport research?
Children and young people aged 4 to 18 are invited to take part in a University of Manchester research study at Royal Manchester Children’s Hospital, exploring early markers of kidney disease.
The study involves:
✅ One visit to the hospital
💉 A small blood sample
🧪 A urine sample
🎁 £15 gift voucher
🚗 Travel expenses covered
For more information email Dr Rebecca Preston: rebecca.preston@manchester.ac.uk
Collaboration
Major ALP-RARE announcement coming in September
ALP-RARE is a new European research project focused on Alport Spectrum Disorders. The project will investigate and compare promising therapeutic approaches, including combinations of treatments, with the aim of protecting kidney function and supporting the development of future clinical studies.
The project is funded through the European Rare Diseases Research Alliance (ERDERA), with partners across Cyprus, Sweden, Germany, the Netherlands, Italy, the UK and Spain.
Watch this space – we’ll share the full announcement in September.
Events
Join us in Budapest next week
More than 250 people have already registered for The 2026 International Workshop on Alport Syndrome, taking place in Budapest from 5 to 7 September – and registration is still open!
Bringing together people living with Alport, families, researchers and clinicians from around the world, the workshop is a unique opportunity to hear about the latest scientific advances, exchange ideas and build new connections.
This year’s programme features an outstanding line-up of international speakers and more than 74 poster submissions, covering research across genetics, nephrology, hearing, ophthalmology and emerging therapies.
There’s still time to join us in Budapest!
Fundraising stories
Becca and Jamie take on 200 miles for Alport UK
This September, best friends Becca Tapsell and Jamie Longley are taking on an incredible challenge: walking 100 miles each in 30 days to raise funds and awareness for Alport UK.
Becca, 19, lives with Autosomal Recessive Alport Syndrome. Her experience has shown her how important greater awareness and understanding of Alport can be. When she decided the time was right to fundraise, her best friend Jamie immediately wanted to join her.
Together, they will walk 200 miles throughout September, while sharing Becca’s experiences and helping more people learn about Alport, genetics, family testing and the importance of early diagnosis.
Katie’s story: finding normality through the Transplant Games
Katie was diagnosed with Alport syndrome at just six years old. After years of treatment, her kidney function declined and she eventually needed home dialysis while continuing to work as a teacher and raise her daughter.
In 2022, Katie received a life-changing kidney transplant from a living donor. Four years later, she took part in the British Transplant Games in Sheffield, competing in football and a 5K race.
For Katie, the Games are about much more than sport. They offer a chance to celebrate life after transplant, connect with others and experience something she describes as “normality for people like us.”
Help us make a difference
Everything we do is made possible by people like you. Your support helps us provide trusted information, connect families, drive research and build a brighter future for people living with Alport.
