Feedback from our previous events
The 2022 International workshop on Alport Syndrome - Calgary, Canada
Download full agenda here
Watch session 1 - Welcome, keynote talk, basic science, genetics, diagnosis
Watch session 2 - Video ‘Hall of Hope’, diagnosis, hearing
Watch session 3 - Video ‘My only antidote’, naming of Alport Syndrome Alport Syndrome Alliance resource base, clinical guidelines
Watch session 4 - Research, patient registries, new treatment options, summary
The 2021 online International workshop on Alport Syndrome
Watch some of the videos from The 2021 online International workshop on Alport Syndrome here.
‘The Workshop was a wonderful experience and probably one of the best events I had ever participated [in]. Thank you very much for your organization and so lovely and interesting adventure.’ [Clinician]
‘Very hard to pick between [the sessions] as all were invaluable - the naming discussion very helpful going forward, the summary sessions were incredible, and the buzz and excitement in the virtual meeting for the next steps.’ [Clinician]
‘The discussion about the options for naming the condition, taking into account meanings across different countries, was valuable.’ [Clinician]
‘All hugely valuable Flozins , eyes and Pregnancy overview. Naming also really interesting.,
‘Rachel's session on the basement membrane, hugely advancing our understanding!’[Clinician]
‘Amazing progress in basic research towards new types of therapies’
‘Fantastic idea to join the medics together - perhaps we could link patients who are medics, medical students, pharmacists, researchers, nurses around the world.’ [Patient family]
‘Impressed with the psychological listening desk - hugely important for Families who are first diagnosed retrospectively and for families of de novo patients.’ [Patient family]
‘Thank you for the recognition of our work in Croatia. Community this big, and all your experiences with patient groups inspire us to do work even harder!’ [Clinician]
‘I am [patient]’'s mum, he talked about Alport openly publicly today for the first time.’ [Patient family]
‘It is always so inspiring to hear patient stories and the different experiences from across the world.’ [Patient]
The 2019 International workshop on Alport Syndrome, Siena - Italy
‘Very good update on Alport Syndrome, great opportunity to discuss directly with basic scientists, to establish new collaborations.’
‘It was a fantastic workshop bringing together experts in the field which, as a young researcher was a fantastic introduction to Alport research and a unique opportunity to put faces to names. Having previously met patients it was great to see them again and find out how they are doing, while meeting some new faces. The research presenting was enlightening while it would have been great to see more early career researchers.’
‘The best of all the Alport workshops. Striking advances in both the science and potential treatments. Excellent mixture of delegates. Nice to see some of the ‘old boys’ challenging the youngsters to remember the basic science and not get too excited about genetics.’
