International Congress of Inborn Errors of Metabolism (ICIEM) Sydney 2021

Field: Medicine (Health Sciences)

I will never forget the first ICIEM I attended in Brisbane in 2003. The meeting introduced me to a vibrant and exciting community dedicated to furthering knowledge in rare metabolic disorders in a collaborative and collegiate manner. It was with these attributes, that we planned the meeting in Sydney with a very positive local organising committee and an experienced international scientific programme committee. Of course, COVID-19 altered everyone's lives over the last few years and this meeting was but one casualty of this pandemic. I would like to thank Erin Kelly from Arinex who maintained calmness through all the changes we undertook. Nonetheless, we were able to convene a hybrid meeting with some attendees, including my vice-chair Anita Inwood, requiring quarantine on return to Queensland. In total, there were 72 registrants who attended physically. Our social secretary Carolyn Ellaway made sure they had a great experience. There were 1532 virtual registrants from 76 countries. The virtual platform and live discussion held up well, but we still would have preferred to have seen you in Sydney. The meeting was made possible by the generous sponsorship of 29 companies and 32 exhibitors. The diversity of delegates and sponsors shows that the reach of our field continues to grow and that we need to nurture and build upon this enthusiasm. Our meeting started with a ‘welcome to country’ from Uncle Brendan, a proud Aboriginal man, emphasising that personal stories have been part of his ancestral culture for tens of thousands of years. That reminded me that all our patients and families, health care workers and researchers have stories to tell. And so, we launched right to present-day stories with a series of talks looking at the diagnostic impact of modern ‘omic’ technology breaking new ground in new ways. These technologies were then discussed in screening scenarios including the acute setting, antenatally and postnatally. The ethical framework for consent and longitudinal outcome studies in screening remain critical for effective programmes. The next set of plenaries looked at treatments that have evolved from genomic technology—we really do seem to be on the cusp of several novel therapies. Our final set of plenaries focused on the patient perspectives of research and paid particular attention to indigenous communities that are not well represented in population datasets and novel research. There were 62 selected abstracts for oral presentation from a total of 555 abstracts. Many of the selected abstracts, especially the special award presentations, demonstrated translational and transformative science in our field. From an Australian perspective, we finished with the inaugural Danks Lecture—as the recipient of this award, John Christodoulou so eloquently said ‘David Danks is considered the grandfather of Australian metabolic medicine and Bridget Wilcken, the grandmother’. The theme of this talk and the meeting was ‘Transforming Rare Disorders’, and that certainly is the story of our amazing predecessors, plenary speakers, selected abstracts and selected speakers. We hope the legacy of their work and this conference, is that there is a transformation for the better, for all our patients with rare disorders.