Welcome from our CEO
Dear all,
Welcome to Alport UK’s September round-up!
September has been a very special month for our community, with much of our work centred around the 2026 International Workshop on Alport Syndrome in Budapest.
The Workshop gave us a valuable opportunity to connect, learn from one another and strengthen international collaboration across the Alport community. We returned from Budapest with lots to reflect on and share with you.
In this newsletter, we’ll share some highlights from Budapest, alongside other news from across the Alport UK community.
Thank you to everyone who joined us in Budapest, and to everyone who helped make the Workshop possible.
Have a great October!
Susie
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Support
Coming together in Budapest
What a few days in Budapest!
More than 250 people from 40 countries came together for the 2026 International Workshop on Alport Syndrome. People living with Alport, families, clinicians, researchers and partners shared knowledge, experiences and the latest developments in Alport research and care.
Thank you to everyone who made this such a special gathering.
Collaboration
Launching ALP-RARE in Budapest
On 8 September, the ALP-RARE project launched in Budapest with a kick-off meeting.
The meeting brought together the project team, including the project lead, Gregory Papagregoriou, and his colleagues from Cyprus, alongside patient representatives. It was an important opportunity to meet, share perspectives and start shaping how patients will be involved throughout the project.
A great start to an exciting new collaboration!
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.
Events
Celebrating Jeans for Genes Day
This September, we celebrated Jeans for Genes Day! 👖
We’re proud to be supported by Jeans for Genes, whose funding helps Alport UK support children and young people living with Alport syndrome and their families.
Across the UK, people put on their jeans to raise money and awareness for organisations supporting people living with genetic conditions. 🧬
A huge thank you to Jeans for Genes and everyone who took part. Your support makes a real difference to our community. 💙
Fundraising stories
Becca and Jamie complete their 200-mile challenge
Huge congratulations to Becca and Jamie, who have completed their incredible 200-mile walking challenge and raised more than £500 for Alport UK! 🎉
The challenge took an unexpected turn when Becca broke her foot, but her boyfriend stepped in to take over the remaining miles and make sure they reached their 200-mile goal together. 💪
We’ve been following their journey with weekly updates along the way. You can catch up on their challenge and watch their updates on our Instagram and Facebook pages. 📱
There’s still time to support their fantastic achievement and help raise even more for Alport UK.
Lucas Reid completes his fundraising challenge
Huge congratulations to Lucas Reid, who has completed an incredible personal challenge by stepping onto the bodybuilding stage while living with Alport syndrome. 💪
Lucas also went beyond his fundraising target, raising vital funds for Alport UK while sharing his journey and helping to raise awareness of Alport syndrome.
And his support didn’t stop there! We were delighted to have Lucas with us in Budapest, where he volunteered at the 2026 International Workshop on Alport Syndrome and helped our team throughout the event.
There’s still time to celebrate Lucas’ achievement with a final donation to his fundraiser.
Help us make a difference
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