This is a topic central to improving health and wellbeing outcomes for the rare disorder community, as it aims to use emerging technologies and available information to better predict, prevent, diagnose and treat disease more accurately, for people and whānau.
They have sought feedback and input on what aspects of Precision Health they should be focusing on – including the opportunities and challenges that exist now and into the future and what areas might be suitable for case studies within the topic of precision health.
Rare Disorders NZ made a submission and we have already had an initial meeting with the Ministry team on what role we can have in this important piece of work.
Rare Disorders NZ knows from lived experience and evidence from surveys and research that diagnosis, care and treatment, screening, managing genetics and hereditary issues in families, and wider health matters are so challenging for those living with rare disorders, and current outcomes are poor and inequitable.
Precision health offers an opportunity to make significant real progress in all these areas for those living with a rare disorder now and in the future.