Rare Disorders Research Network
Connecting rare disorders researchers in Aotearoa
Rare Disorders Research Network
The initiative and establishment of New Zealand's only Rare Disorders Research Network is the result of a joint collaboration between Rare Disorders NZ and Dr Tara Officer Senior Lecturer in Applied Health Science, School of Nursing, Midwifery and Health Practice, and Adjunct Professor Karen McBride-Henry (both Victoria University of Wellington).
The network was established in late 2024.
Leadership group
Rare Disorders Research Network Leadership Group supports the growth and evidence-based and whakaaro Māori impact of the network.
Co-chairs
- Rare Disorders NZ Chief Executive Chris Higgins
- Associate Professor Phillip Wilcox of University of Otago
Leadership group members
| Name and research institute | Experience/Research field |
|---|---|
| Phillip Wilcox University of Otago | Developing a variome resource for Māori evaluating alternative disease risk estimation methods using mātauranga and tikanga Māori. Mātauranga Māori expertise |
| Miriam Rodrigues University of Auckland, School of Medicine and Auckland City Hospital, Neurology Department | Patient registries, prevalence studies, natural history studies, research studies, clinical trials |
| Sara Filoche University of Otago | Prenatal screening for genetic conditions and genomics in primary healthcare. |
| Farah Lamiable-Oulaidi Ferrier Research Institute, Victoria University of Wellington | Drug development for Krabbe disease |
| Gareth Baynam Rare Care Centre, Perth Children's Hospital | A broad spectrum at local, national and global levels |
| Stephanie Hughs University of Otago | Development of human cell models of Batten disease, gene and drug therapies. Co-lead of RARITY at UoO |
| Justin O’Sullivan Liggins Institute University of Auckland | Acute care genetics - trio sequencing. Functional characterization of variant impacts - common and rare. Newborn genetic testing project. Helped to establish and sits on the Liggins Institute Māori Research Advisory Group |
| Louise Bicknell University of Otago | A molecular geneticist focused on rare genetic disorders of development, particularly in New Zealand families. Identified > 25 novel disease genes and lead to genetic diagnoses for > 200 individuals |
| Karen McBride Henry Victoria University | Adjunct Professor of Nursing – School of Nursing, Midwifery, and Health Practice - Te Kura Tapuhi Hauora. Health access and lived experience for those with Rare Disorders |
| Tara Officer Victoria University | Senior Lecturer in Applied Health Science Programme Director, Professional Doctorate Programme |
| Samuel Wojcik Wellington UniVentures | Supporting research in the rare disorders space (through partnerships, connections and commercialisation). Translation of research towards clinical solutions. Connecting biology, drug/diagnostic development, clinical need and patient experience together to develop new drugs or diagnostics to support patients with rare disorders |
| Michael Roguski University of Wellington | Kaupapa Māori expertise, justice, equity, disability, rare disorders expertise |
Learn more about the expectations and scope of the group here.
Any questions or requests for further information, please contact chris@raredisorders.org.nz.
