The Fabry Update: Advancing Research, Collaboration, and Hope
Today marks the final day of the 9th Fabry Update, a landmark moment in a meeting that has become a cornerstone of the global Fabry disease community. First established in 2007 by Professor David Warnock and Professor Raffi Schiffmann, the Fabry Update has grown into a unique and highly respected scientific forum, sustained over the years through the dedication, collaboration, and shared commitment of experts worldwide.
The Fabry Update stands apart as the only global meeting dedicated entirely to Fabry disease. Held every two years and funded through educational grants from the pharmaceutical industry, with no commercial activity permitted, it provides a focused and independent environment where clinicians, researchers, and specialists come together with a shared purpose: improving outcomes for patients and families affected by this rare condition.
Kidneys for Life has proudly worked with the Steering Committee and the pharmaceutical supporting organisations since the 4th Update was hosted in Manchester in 2015. This ongoing collaboration has helped ensure the continued success and impact of the meeting, reinforcing its position as a vital platform for scientific exchange and progress.
A defining strength of the Fabry Update is its emphasis on meaningful, in-depth discussion. Unlike many larger conferences, it prioritises time for expert dialogue – allowing participants to debate emerging evidence, share clinical experience, and challenge ideas. This environment fosters genuine collaboration and is widely recognised as critical to advancing understanding and improving care in Fabry disease.
Throughout the year, the Steering Committee, now led by Professor David Warnock and Dr Fabian Braun, works tirelessly to design a programme that reflects the latest developments in the field. Their efforts bring together leading international experts to present cutting-edge research, explore new treatment approaches, and address the complexities of patient management.
Over the years, there has been significant progress in both research and clinical care. Advances in diagnostics, therapies, and long-term disease management are steadily improving patient outcomes and offering increasing hope to individuals and families living with Fabry disease. These achievements, highlighted in this video by Professor Juan Politei, underscore the importance of sustained collaboration and scientific inquiry.
At the heart of the Fabry Update remains a clear and consistent focus: patient wellbeing and the advancement of research. Every discussion, presentation, and debate ultimately centres on improving quality of life and delivering better, more effective care.
A powerful message from Professor Warnock to patients and their families encapsulates this commitment and optimism: “medical research is on your side.” It is a reminder that, despite the challenges of a rare disease, the global community continues to work tirelessly to drive progress forward.
Feedback from the 9th Fabry Update has been outstanding, reflecting both the quality of the programme and the value of the discussions it enables. As this chapter closes, attention now turns to the future. With continued collaboration and commitment, preparations begin for the 10th Fabry Update in 2028 -ensuring that this important meeting continues to inspire progress, innovation, and hope for years to come.