Rare disorders researchers connect and share knowledge

In New Zealand, there are a number of world-leading rare disorders research initiatives being undertaken, but many of them are happening in isolation from one another, because there is no network of rare disorders researchers and specialists. This means that opportunities for knowledge and insights to be transferred from one area of research to others, and to clinical practice are potentially being lost.

Rare Disorders NZ is determined to change this. From clinical practice to therapeutic development and health systems delivery, we, in collaboration with Wellington Univentures and Victoria University of Wellington, brought together experts from a wide range of fields on the eve of Rare Disease Day who all share in common their interest and expertise in rare disorders.

Over 40 attendees gathered at Victoria University to be introduced to each other’s work and to network. Guest speaker Prof. Gareth Baynam from the Rare Care Centre in Perth spoke of how rare disease discoveries have often transformed medical care for common diseases. The commonly used cholesterol-lowering drugs known as statins came from rare disease research, as have many treatments for cancers and infections.

“Investing in the battlefield of rare diseases provides great benefit for all of us,” - Prof Baynam.

Guest speaker Prof. Justin O’Sullivan from the Liggins Institute spoke of the Institute’s newly established genetic sequencing facilities to vastly improve diagnosis of rare disorders in infants in New Zealand.

Following these presentations attendees were given the opportunity to provide a one minute ‘elevator pitch’ to the room to showcase their work. Afterwards everyone enjoyed time networking over lunch.

Rare Disorders NZ will now be working on the next steps of creating a network to ensure that moving forward we all have improved awareness of the many exciting developments happening in this field.