Experts convene to discuss NZ’s poor track record on rare disorders
Rare disorder experts from around the world, including New Zealand, are convening for a virtual roundtable today to discuss the dire situation for people living with a rare disorder in New Zealand.
New Zealand lags behind most other comparable OECD countries in supporting persons living with a rare disorder, offering no planned pathways for clinical care and little guidance for health professionals on how to manage a patient with a rare or undiagnosed disorder.
Rare Disorders NZ, in collaboration with Costello Medical UK, is hosting the one-day roundtable to provide a platform for rare disorder advocates, healthcare professionals and researchers to share insights from their own experiences with rare conditions, either personally or professionally, and to discuss opportunities for improving the current situation in New Zealand for individuals with a rare disorder and their whānau.
The roundtable could not be more urgent, as persons affected by a rare disorder in New Zealand continue to disproportionately suffer poor health outcomes due to the lack of prioritisation given to the needs of this population group that collectively is similar in size to the population of Wellington.
“We have a health system in New Zealand that has for too long failed people living with a rare disorder, and we are deeply concerned that despite the significant overhaul of the health system this year, the Pae Ora Bill did not include any legislative change for rare disorders. Bringing together experts within this field is a really exciting opportunity to identify solutions to improve health outcomes for the rare disorder community in New Zealand,” says Michelle Arrowsmith, Chief Executive of Rare Disorders NZ.
While Minister of Health Andrew Little in June announced he was committed to the development of a Strategy for Rare Disorders, the rare disorder community in New Zealand is understandably skeptical about how much of a difference it will make to their health and wellbeing, given the strategy was not included in the Pae Ora legislation.
“We’re not interested in tokenism, we want to see true co-design with the rare community and we will be holding the Government and their health agencies to account to ensure they truly are committed to delivering meaningful change,” says Ms Arrowsmith.
“We will be collating the ideas brought forward in today’s roundtable and presenting them to Government and their officials to ensure the strategy is fit for purpose and makes a difference to those affected by rare disorders.”