Episode 22 (Part 1 - Clinical Professor Gareth Baynam)

The ResearchWorks Podcast

DIGIT-ALL: RARE DISEASES
Rare Diseases - a 2 part special!
Rare diseases are increasingly recognised as a global public health priority and contribute to significant and disproportionately high health system impacts. Accordingly, they present clinical and public health challenges, as well as opportunities for digital health solutions across the lifespan, including improved diagnosis, treatment, navigation and care coordination, and integration and coordination for broader societal and patient wellbeing. People living with rare diseases, individually and cumulatively, are digital disruptors.
In this manuscript the authors describe some of the unique dynamics of the rare disease domain as they currently, or have the potential to in the future, apply to digital health; highlight some recent international rare diseases digital health initiatives; and touch upon implications for those with more common disorders.
Dr Gareth Baynam is a Clinical Geneticist working in Western Australia with a long-standing commitment to improved Indigenous health care. Dr Baynam works to develop and deliver genetic health care in partnership with Aboriginal health leaders and the community.
Among current activities, Dr Baynam is a practising Clinical Geneticist, a Clinical Genomics Policy Advisor at WA Health, Director of the Undiagnosed Diseases Program, a co-director of genetic and rare diseases research at the Telethon Kids Institute, and a member of the International Scientific Advisory Board of the new pan-European Union genomic and multi-omic initiative for rare diseases (Solve-RD).