Rare Disorders Research Network Event
Rare Disorders New Zealand and Victoria University of Wellington are hosting a Rare Disorders Research Network event for members of the group to come together and connect, share their work and stay up to date on what is happening in the area.
When: Thursday 27 March 2025
All members of RDNZ’s Rare Disorders Research Network (RDRN) are warmly invited to register for the event. Network membership is open to recognised rare disorders researchers here
Benefits of membership include:
- Invitations to member only rare disorders research networking events and forums
- Opportunities for your research to be promoted to the rare disorders community through RDNZ communications channels
- Enhanced prospects for your research to be embedded into practice in New Zealand as a result of RDNZ and Support Group advocacy
- Sharing of knowledge and ideas among colleagues in the rare disorders research community
- Being kept up to date about international rare disorders sector collaborations and developments
- Opportunities to contribute to the growth of New Zealand’s rare disorders research capacity, including the development of a rare disorders research strategy
- RDRN members are invited to register for the event here
Agenda:
Time | Programme | Presenter |
| 10 - 10:15 | Introduction and mihi/welcome | Rare Disorders Research Network co-chairs: Associate Professor Phillip Wilcox; Kaiawhina Māori | Kaikōkiri Māori, Genetics Mātai Ira, University of Otago. Deputy Director, Maurice Wilkins Centre. Chris Higgins; Chief Executive Rare Disorders New Zealand |
| 10:15 - 11:30 | Towards an Aotearoa New Zealand rare disorders research strategy: Aotearoa New Zealand genomic | Professor Stephanie Hughes. Director, RARITY Otago Research Theme. Batten Disease Group Neurodegenerative and Lysosomal Disease Laboratory University of Otago | Ōtākou Whakaihu Waka Department of Biochemistry Associate Professor Phillip Wilcox |
| 11.30 – 12.30 | Developing a rare disorders research strategy | An interactive session co-facilitated by Phillip Wilcox and Chris Higgins |
| 12:30 – 2.00 | Networking lunch | Poster displays |
| 2.00 – 2.50 | European Rare Disease Research Alliance (ERDERA) and its significance for New Zealand | Professor Gareth Baynam, Australia National University, National Centre for Indigenous Genomics (participating online) Associate Professor Louise Bicknell, University of Otago Professor Hugh Dawkins, Executive Director, DA Precision Health, Western Australia (participating on line) |
| 2.50 – 3.00 | Concluding comments | Chris Higgins and Phillip Wilcox |
Event details
Date & time:
27 Mar 2025, 10 a.m. - 27 Mar 2025, 3 p.m.
Our Collective
Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.
Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.
