Working Together for Rare Disorders

 

 

 

We will be running our third annual COMPASS Community Session on Monday 23 March 2026 from 9:45AM to around 4:00PM.

This year we will be at Parnell Community Centre in the Jubilee Building, 545 Parnell Road. We will also be livestreaming the event via Zoom.

If you would like to join us either in person or via the livestream, please:
 

 

We have a series of presentations planned, some by COMPASS researchers and some by representatives of community groups with whom we have worked, including Rare Disorders New Zealand (RDNZ) and the New Zealand Mirror Group for ERDERA (the European Rare Diseases Research Alliance). We also have a panel session involving both academics and community advocates. The schedule is as follows – it is not completely filled out and is subject to change at this point, so please keep an eye on this page, and email compass@auckland.ac.nz if you want to be kept informed about this and other events that we run.

 
09:45AM–10:15AM Morning tea (catered)

10:15AM–10:25AM Opening and introduction to COMPASS – Professor Barry Milne, Director, COMPASS Research Centre

10:25AM–10:35AM Rare disorders and complex illness research at COMPASS – Dr Natalia Boven, COMPASS Research Centre

10:35AM–11:20AM Further COMPASS and RDNZ talks on rare disorders research

11:20AM–11:30AM Updates on the RDNZ Research Network – Chris Higgins, CEO, RDNZ

11:30AM–12:25PM RDNZ Research Network talks

12:25PM–12:45PM Q&A session with COMPASS & RDNZ researchers

12:45PM–01:30PM Lunch (catered)

01:30PM–02:30PM Panel Discussion: Engagement with the rare disorders community

02:30PM–02:50PM Introduction to the New Zealand National Mirror Group for ERDERA

02:50PM–03:00PM Closing remarks – Chris Higgins, CEO, RDNZ

03:00PM–CLOSING Afternoon tea (catered) led by the RDNZ Support Group