Rarity - University of Otago Research Theme

24/06/2025

Congratulations to Associate Professor Louise Bicknell on receiving a Catalyst: Seeding Grant from Royal Society Te Apārangi! This funding will support her team’s work advancing rare disorder research in Aotearoa New Zealand through international collaborations, including the European Rare Disease Research Alliance.

Louise's Rare Disease Genetics Lab group also recently helped identify a newly recognised genetic condition affecting children, offering answers and hope to families around the world — a powerful example of research making a real difference.

Read more: https://www.odt.co.nz/news/dunedin/bid-help-families-results-discovery

A journey to help 10 New Zealand families get answers for rare brain disorders affecting their children has led to the discovery of the genetic...

26/05/2025

Raise awareness and funds for a cure to Freidreichs Ataxia, a cureless disease!
Judd Adamson and his mates (~50) are fundraising for our Friend Flynn who has Freidreichs Ataxia, a degenerative neuromuscular disease.
May is a nationwide awareness month, and the challenge is to “Lend Us Some Muscle” every day in May, which includes running a set goal etc. The challenge is to do some sort of exercise every day to lend some muscle every day in May to help raise funds for a cure. This has brought around 50 of our mates together this year to help each with our own challenges every day. As a flat of 6 boys, we are trying to run the length of New Zealand between us, over the last three weeks I’ve clocked up over 150 km. You’ve probably seen Flynn around campus, and he is simply a standout individual and so it makes motivation for the challenge easy. Below is the link for donations and everything is hugely appreciated, if this is not possible, spreading the word is equally appreciated. Please get in touch if you know of any research going on into FA as well, it would be great to hear more about the work being done

Hi!!! We are a group of mates in our early 20's from all over New Zealand, taking on the Lend Us Some Muscle Global Challenge 2025 for the second year running. We’re doing it for our good mate Flynn Mitchell, who was diagnosed with Friedreich Ataxia – a rare neuromuscular disease that seriously ...

22/04/2025

Two weeks ago, we had the pleasure of featuring Prof Simon Malpas as the first speaker in our new webinar series. He shared his incredible journey translating research on hydrocephalus into the development of a world-leading brain pressure sensor — a groundbreaking innovation that’s changing lives.

Want to see the real-world impact of this work? Check out Jess Grainger’s powerful story as she speaks with Paddy Gower about how this life-changing technology has impacted her:

Jess Grainger has a condition called hydrocephalus, which causes inflammation of the brain. The implant monitors the pressure, and tells her if she needs to get to hospital.

07/04/2025

Remember to tune in for RARITY's first Webinar this Wednesday from 12:15 pm (NZST).

11/03/2025

Shared from our RDNZ friends page.

E whai pānga ana te mate tipua nei ki ngā taiaki tupu o te mata, o ngā ringaringa, o ngā waewae anō hoki.

28/02/2025

What a way to mark the launch of RARITY. Professor Steph Hughes received a research award from the Governor General for leadership in Rare Diseases!
Huge congratulations Steph! So very deserved.

28/02/2025

28/02/2025