More than 80 people joined us at the Westminster Boating Base in London for our Alport Information Day on 4 July 2026 – and what a fantastic day it was!
With glorious sunshine outside and a room full of energy inside, the day was packed with expert talks, inspiring personal stories, meaningful conversations and plenty of laughter. Patients, families, researchers and healthcare professionals came together to learn from one another, build new connections and celebrate the strength of the Alport community.
Welcome and check-in
Alport UK’s CEO, Susie Gear, kicked off the day at 9.45 am with a warm welcome. She then invited everyone to take part in a collective check-in, where attendees introduced themselves, shared a little about their connection to Alport syndrome, and asked a question they hoped the community could help answer.
All the questions were added to a shared board, where they remained visible throughout the day. Speakers and attendees could return to them during discussions, helping to ensure that everyone’s voice was heard.
Young adults panel
At 11 am, Jamie Walker took to the stage as chair for the day’s panel discussions. He introduced the first panel, bringing together Isaac, Aura, Aby and André, who shared their personal experiences of growing up and living with Alport syndrome as young adults. Their honest and inspiring stories covered the challenges they have faced, as well as the resilience, friendships and hope they have found along the way.
We also had the privilege of hearing from Joseph McLean, the son of Alport UK Trustee Amanda McLean. Joseph shared his personal journey with Alport syndrome and spoke about recently receiving a life-changing kidney transplant from his father. His honest and moving story was an inspiration to many in the audience, while highlighting the incredible impact of organ donation and the strength of family support throughout the transplant journey.
The panel was followed by an interactive Q&A session, giving attendees the opportunity to ask questions and hear directly from the panellists. The conversation covered a wide range of topics, from navigating education and work to relationships, mental wellbeing and the realities of living with Alport syndrome. It was an open, honest discussion that resonated with people of all ages in the room.
First coffee break
The morning coffee break gave everyone a chance to continue the conversations over a cup of tea or coffee. New friendships were formed, familiar faces caught up, and patients, families, clinicians and researchers connected in a relaxed and welcoming atmosphere.
For many attendees, these informal conversations were just as valuable as the presentations, offering reassurance, shared experiences and a reminder that no one has to face Alport syndrome alone.
Throughout the day, our youngest attendees were also well looked after. While parents and carers attended the sessions, a fantastic team of volunteers kept the children entertained with theatre, arts and crafts, games and other fun activities. Their energy and creativity helped create a welcoming, family-friendly atmosphere, ensuring that everyone could enjoy the day and feel part of the Alport community.
The experts panels
Jamie Walker returned to chair the second panel discussion, bringing together three leading experts in Alport syndrome: Dr Zainab Arslan, Paediatric Nephrologist at Great Ormond Street Hospital for Children; Professor Jeffrey Miner, Professor of Medicine in Nephrology at Washington University in St. Louis; and Dr B. André Weinstock, Scientist and Kidney Health Advocate. Together, they discussed the latest advances in Alport research, shared insights from their own work, and offered practical advice on maintaining kidney health, the importance of regular monitoring, and how early diagnosis and ongoing care can help people with Alport syndrome achieve the best possible outcomes.
The third panel focused on the work of the Alport Research Hub in Manchester and the research taking place to improve understanding and treatment of Alport syndrome. Chaired by Jamie Walker, the panel featured researchers Gema Bolas Gonzalez-Lliberos, Emily Williams and Bernard Davenport, alongside Professor Rachel Lennon.
They also discussed the exciting progress being made in gene therapy and the importance of collaboration between researchers, clinicians and the patient community in driving research forward.
Lunch break
After a busy morning of presentations and discussions, everyone enjoyed a well-earned lunch break, prepared by our kitchen volunteers, Archie, Iona and George.
It was another valuable opportunity for attendees to meet new people, reconnect with familiar faces and continue conversations sparked by the morning sessions.
Before heading back inside, we gathered outside the Westminster Boating Base for a group photo – a wonderful moment that captured the strength, warmth and togetherness of the Alport community.
Scientific presentations
The day concluded with two scientific presentations. The first was delivered by Professor Rachel Lennon, who shared an update on the work of the Alport Research Hub in Manchester and the progress being made by researchers around the world. She explained how scientists are working together to better understand Alport syndrome, identify new treatment approaches and move promising discoveries from the laboratory into clinical trials.
The second presentation was delivered by Dan Jagger, who explored hearing loss in Alport syndrome. He explained how the ear works, why hearing loss develops in many people with Alport syndrome, and how it can affect everyday life. Dan also discussed the latest research into hearing and highlighted the importance of regular hearing tests, early support and hearing technologies.
Susie’s presentation and checkout
Alport UK CEO Susie Gear brought the day to a close with a presentation highlighting the charity’s work over the past year and its plans for the future.
She also invited everyone to join the international Alport community at The 2026 International Workshop on Alport Syndrome in Budapest this September, where patients, families, clinicians and researchers from around the world will come together to share knowledge and shape the future of Alport care and research.
Before saying goodbye, Susie invited everyone to take part in a final check-out, sharing one word to describe how they were feeling after the day. The words that came up again and again were informed, inspired and uplifted – a fitting reflection of a day filled with learning, connection and hope.
Please consider donating
Events like our Information Day are only possible thanks to the generosity of our supporters. If you believe everyone living with Alport syndrome deserves access to trusted information, expert advice and a supportive community, please consider making a donation. Every gift helps us organise more events like this and support even more families across the UK.