shining a light on Alport Syndrome

The 2014 International Workshop on Alport Syndrome, held in Oxford, 3-5 January 2014, brought together interested medical professionals, scientists, geneticists, academics, researchers and patient representatives from all over the world. alport uk hosted the international workshop at the Said Business School, University of Oxford. Delegates came from: Australia, China, USA, Canada and Europe.

We are very grateful to Julie Kiddie who did the initial web search of Alport research to prepare the first draft of the invites. The report of the workshop was written up in Kidney International, an international journal which aims to inform the renal researcher and practicing nephrologists on all aspects of renal research.

download a summary of the report

It was a hugely successful meeting: fantastic speakers, great conversation and discussion and plans for research in the future. The feedback from all those who attended was exceptional. To have both clinicians and patients in the same room worked well. We had patient groups from Australia, China and America, Holland, Italy, Spain, Portugal and France – all represented in the photo below:


Attending from the UK were Professor Colin Baigent (not pictured), Jules Skelding, Susie Gear, Mike Gear, George Walker, Patrick Walker and Jamie Walker. A couple of additional UK representatives were unable to attend at the last minute and with funding from the British Kidney Patients Association, we were able to video the key speakers. The videos of key speakers are being edited and will be available on Youtube and linked to this website.

Exciting outcomes:

  • China, Australia, UK and Europe are now going to genetically test for Alport Syndrome using the Leiden Open Variant Database system.
  • The UK renal registry is starting not only to take shape but a strategy is being worked on as to how to link it worldwide.
  • A new basic science group of clinicians and scientists have joined together and are starting to research together.
  • There has been an increase in the number of Alport specific research projects and new collaborations between researchers in different countries.

One of our younger contributors interviewed the participants as they arrived and at the end of the workshop. Please note the sound is not great, so you may want to have your computer volume turned up when you watch the video.

Below are some of the videos taken of the speakers at the workshop.

Clifford Kashtan – Paediatric Nephrologist from the USA talking about Alport Syndrome – the clinical management and natural history of.

view online

Jeffrey Miner – Professor of Medicine from the USA talking about the biology of Alport Syndrome.

view online

Chris Winearls – Kidney Specialist – Oxford Kidney Unit, UK talking about the history of nephrology.

view online

Frances Flinter – Professor at Guy’s and St Thomas Hospital, London UK – an introduction to Alport Syndrome.

view online


The 2015 International Workshop on Alport Syndrome

The Workshop Organising Committee together with Alport patient groups from across the world all met up on 25-27 September 2015 in Göttingen, Germany.

It was a three-day working session with key speakers, poster sessions, breakout groups and panel discussions. We invited a wide range of interested medical professionals, scientists, geneticists, academics, researchers and representatives from the national Alport patient groups.

Alport Intl workshop flyer 15

Chinas Alport Community Video

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