On 8 April 2020, Rare Voices Australia (RVA), in conjunction with its Scientific and Medical Advisory Committee, issued this statement calling for the development of critical care guidelines for Australians living with a rare disease to inform Australian hospitals and clinicians during the COVID-19 pandemic. As you know, people living with a rare disease require heightened preventative measures and personalised, collaborative and consultative approaches to treatment and care. It is imperative that these patients have continued access to their ongoing treatment during this pandemic, and that special requirements are considered for rare disease patients diagnosed with COVID-19.
RVA encourages clinicians and researchers to use its critical care guidelines statement however they best see fit. RVA has distributed the statement publicly and reached out to state government contacts as well as all state Chief Health Officers, expressing interest in facilitating the development of any COVID-19 related work that will impact Australians living with a rare disease, such as critical care guidelines.