In late 2022, with pro-bono support from medical communications specialists Costello Medical, Rare Disorders NZ hosted a multidisciplinary virtual roundtable event involving key stakeholders from both New Zealand and overseas, including rare disorder advocates, patients/families, clinicians and researchers, to discuss the unmet needs of the rare disorder community in New Zealand and to identify specific challenges and potential solutions.

A summary on key findings and recommendations are outlined in the inforgraphic below: