The 2026 International Workshop on Alport Syndrome

Introduction

*The Hungarian Parliament as seen from the Danube river.*

Following the success of The 2025 International Workshop on Alport Syndrome in Beijing, the global Alport community came together once again in Budapest for an inspiring few days of connection, learning and collaboration.

From 5 to 7 September, around 250 people from 40 countries travelled across the world, bringing patients, families, clinicians, researchers, industry partners, charities and supporters into one shared space, the beautiful Semmelweis University.

Three organisations organised The Workshop on behalf of the Alport Syndrome Alliance:

Alport UK
ERKNet
Semmelweis University

It was a privilege to be part of a Workshop that held both the science and the lived experience of Alport side by side. Across the programme, the same message came through again and again: progress happens when people living with Alport engaged, and when the people working on research, care and treatment keep those experiences at the centre.

All the photos below have been shot by the amazing Anna Dengler from ERKNet.

Patient Day on Saturday morning

*A moment from the check-in circle at the beginning of the Patient Day on Saturday.*

The workshop opened with the Patient Day, a deeply moving day dedicated to people living with Alport and their families.

Registrations opened at 8.30 am, with our incredible team of volunteers in red t-shirts ensuring everyone received a warm welcome and a smooth start to the day.

*Our volunteers at the registration desk.*

Since the very beginning, live illustrator Sophie Killingley captured the conversations and atmosphere as they unfolded.

*Live illustration by Sophie Killingley.*

The morning began with a warm welcome from Susie Gear, followed by a group check-in with everyone in the room. Such check-in is a tradition for our annual Workshop. It makes every person feel welcomed and included, so each participant was invited to introduce themselves by name, country and connection to Alport. This simple but meaningful moment helped people feel included, valued and part of the global Alport community from the very beginning.

*Susie Gear moderating the Patient Day.*

From there, the programme moved through a series of presentations on different subjects, including the Alport spectrum, kidney health, genetics and family planning, with contributions from speakers including Rachel Lennon, Frances Flinter and Susie Gear.

What made the day so powerful was not only the expert information, but the personal stories. We heard from people living with Alport in Hungary, Spain, Japan and beyond. We heard about diagnosis, uncertainty, family decisions, mental health, transplantation, pregnancy and what it means to live well with Alport. Some families were also looking ahead to welcoming a baby, which brought a very tender sense of hope into the room.

The patient panel was one of the most memorable parts of the day. Moderated by Jamie Walker (UK), it included Silvia Munguía (Spain), Ádám Velkey (Hungary), Antoan Dinchev (Bulgaria) and Lucas Reid (USA). Their contributions helped bring the human reality of Alport into focus. Their honesty reminded everyone why this work matters.

*The group photo with all patients and volunteers.*

After lunch, participants gather together for a group photo, then had the chance to visit the Hungarian University laboratories and see Alport research in action. Later, patients were invited back for dinner with researchers and poster presenters. It was a lovely way to bring the community together: people sharing questions, stories and encouragement across countries and disciplines.

The Scientific Workshop from Saturday until Monday

The Scientific Workshop began later on Saturday, immediately following the Patient Day, and continued through to Monday. The programme was packed with keynote talks, presentations and discussions, far too many to cover in full here. However, one clear message ran throughout the three days: Alport research and treatments are advancing rapidly, and continued international collaboration between patients, researchers, clinicians and organisations is essential to turn that progress into better care.

*The opening session of The Scientific Workshop.*

Sessions covered the extended clinical spectrum of Alport, diagnosis and management guidelines, genetic testing, variants of uncertain significance, the role of kidney biopsy, hearing and eye involvement, pregnancy, transplantation, registries, clinical trials and future treatments.

*The audience at The Scientific Workshop.*

There was strong focus on COL4A3 and COL4A4 variants, risk, genotype and phenotype, and what these findings mean for families. Speakers also explored mechanisms of disease, including collagen IV networks, kidney pathways, cochlear tissues, animal models and biomarkers.

The ASSENT project (Alport Syndrome Surrogate Endpoint Network) was led by the Alport Syndrome Foundation in the USA and ran in parallel to the Patient Day. It was another important part of the workshop, looking at surrogate endpoints and the data needed to support future clinical trials in Alport syndrome. The programme also included updates on work with regulators, registry development and clinical trial readiness across different countries.

*A moment from The Scientific Workshop.*

Later sessions looked towards the future, including the pioneering work of the Alport Research Hub in Manchester, new therapies in development, gene therapy, and other promising pre-clinical research. It was encouraging to see so many people working from different angles towards earlier diagnosis, better care and new treatment possibilities.

A memorable evening on the Danube

*Participants of The Workshop at the Gala Dinner with the Hungarian Parliament in the background.*

On Sunday evening, delegates stepped away from the scientific sessions to enjoy a special gala dinner aboard a boat on the River Danube, as a thank you to everyone who dedicates their lives to advance treatments and knowledge for Alport.

With Budapest’s landmarks illuminated along the riverbanks, the evening offered a wonderful opportunity to relax, reconnect and continue the collaborative research conversations in a more informal setting.

*The boat, River Diva, that hosted the Gala Dinner.*

Guests also enjoyed a lively performance of traditional Hungarian dance, bringing a joyful taste of the country’s culture to the occasion. It was a memorable evening that celebrated the friendships and sense of community at the heart of the international workshop.

*A moment from the traditional Hungarian dances on the deck of the boat.*

The ALP-RARE project kick-off meeting on Tuesday

The workshop concluded on Tuesday with the ALP-RARE project kick-off meeting, led by Gregory Papagregoriou and his Cyprus-based team. The ALP-RARE project is testing three new treatments for Alport Syndrome. Members of the European Alport community came together to help shape the project from its very beginning.

*A moment from the ALP-RARE kick-off meeting on Tuesday.*

A key focus was the development of patient-reported outcomes: information shared directly by patients about their symptoms, wellbeing and everyday experiences, including fatigue, hearing and vision difficulties, emotional health, relationships, work and family life.

Please email workshop@alportsyndromealliance.org if you live in Europe and are interested in getting involved in understanding the testing of these three new treatments.

Clinical tests cannot tell the whole story of living with Alport syndrome. By involving patients in questionnaires, advisory panels and future research, ALP-RARE can focus on the outcomes that matter most to patients. Their perspectives will help researchers understand what patients need from new treatments, which burdens the treatments need to target and how clinical trials should measure success. This ensures that future research and therapies reflect real lives and priorities, with patients involved as valued partners throughout the process.

Thank you to our sponsors and supporters

A workshop of this scale would not be possible without generous support. We are very grateful to all the sponsors and supporters recognised in the workshop materials.

*Susie Gear thanking the sponsors of the event.*

We are deeply grateful to Bayer Plc and Travere Therapeutics for their generous financial support as event sponsors.

A big thank you also to all organisations whose support helped make the workshop possible, including Natera, Boehringer Ingelheim, Stoneygate Trust, Kidney Research UK, Purespring Therapeutics and Eloxx Pharmaceuticals.

We are also grateful for the support connected to the Hungarian costs, including Semmelweis University and Hungary’s National Research, Development and Innovation Office.

Their support helped make it possible for this global community to gather, learn from one another and strengthen the collaborations that will shape the future of Alport research and care.

Special thanks to the organisers and volunteers

Our heartfelt thanks go to Semmelweis University for hosting and welcoming the Alport community in Budapest, and especially to Professor Kálmán Tory for his leadership, care and generosity throughout the workshop.

*Professor Kálmán Tory thanking everyone at the end of The Workshop.*

We are also very grateful to the ERKNet team, including Professor Franz Schaefer, Anna Dengler, Stefanie Häberle and Carol Barahona Ponce, for their huge contribution behind the scenes and throughout the event.

*Professor Franz Schaefer, founder of the European Reference Network for Rare Kidney Diseases (ERKNet).*

Thank you to the Alport UK team, Susie Gear, Jayne Perrin, Faith Wright and Giovanni Gaetani, for all the work that went into supporting the event and helping bring the community together.

*Susie Gear briefing the red t-shirt volunteers.*

And a very special thank you to the wonderful volunteers in red T-shirts. They welcomed people, guided attendees, answered questions, helped the days run smoothly and brought warmth to every corner of the workshop.

Finally, thank you to our hosts in Budapest. The team at Semmelweis University and the whole city gave this global community a beautiful place to meet, talk, learn and look forward.

We left Budapest with full hearts, new connections and a renewed sense of purpose. For everyone living with Alport syndrome and for everyone advancing treatments and knowledge for Alport this workshop was an important step forward.

See you in Brazil in September 2027

As we said goodbye to Budapest, we did so with renewed inspiration, stronger connections and a shared commitment to improving the lives of everyone living with Alport syndrome. Thank you to every patient, family member, researcher, clinician, supporter and volunteer who made the workshop so special.

We look forward to bringing our global Alport community together again in Brazil in September 2027. See you there!

Coming together in Budapest for The 2026 International Workshop on Alport Syndrome