Alport Syndrome Alliance

Danika Marie Estella presented case studies from the Philippines and started a discussion on diagnosing children when resources are limited. Clinical suspicion and family history may be enough to facilitate early intervention to delay the progression of chronic kidney disease. Degree of haematuria and extra-renal features can also offer clues. #AlportWorkshop

Rini Rossanti presented case studies from Indonesia. Genetic testing has enormous benefits, and the earlier it is done the better. One of Rini’s patients in the room shared that although it was hard to receive the diagnosis, it enabled them to receive specific support. #AlportWorkshop

Janewit Wongboonsin’s flowchart prompted productive conversation about how to progress a diagnosis of a variant of uncertain significance #AlportWorkshop

Tomoko Horinouchi described types of genetic tests in Alport. Becky Ma and Lim Ru Sin provided guidance on pre- and post-test genetic counselling. Support individual needs, consider psychosocial impact, refer for early treatment, signpost to patient groups! #AlportWorkshop

Developing understanding of Alport Syndrome: Kandai Nozu provided an overview of Alport Syndrome in Asia, Judy Savige updated on the diversity of clinical features, and Rachel Lennon explained what happens in the kidneys in Alport Syndrome. #AlportWorkshop

Thomas Loh, Chairman of Medical Board, NUHS, gave an inspiring opening address, explaining the prevalence and under-diagnosis of Alport Syndrome. Thomas urged us to learn from each other, sharing valuable knowledge & perspectives, to make a difference to patients. #AlportWorkshop

We’re delighted to welcome over 100 participants from 20 countries across Asia Pacific to this one-day workshop on Alport Syndrome in Singapore, organised in collaboration with the National University Hospital Singapore. The 8th international workshop in a series! #AlportWorkshop

In just over a week, in collaboration with the National University Hospital Singapore, the Alport Syndrome Alliance will be delivering the eighth international workshop on Alport Syndrome. We're excited to see the 100+ people who have registered from 20 countries across Asia Pacific.