Rarity - University of Otago Research Theme

05/06/2026

We’re excited to share the latest edition of the RARITY Newsletter!

This issue highlights:
🔹 Reflections from the inaugural RARITY Symposium
🔹 New internship and networking grant opportunities
🔹 Translational rare disease research initiatives across Aotearoa
🔹 Member funding successes, awards, publications, and media engagement

A major theme emerging from this work is that rare disease research is not only a scientific challenge — it’s also about building connections between researchers, clinicians, advocates, policymakers, patients, and whānau to create meaningful real-world impact.

Read the full newsletter here:
https://indd.adobe.com/view/4bd74204-589b-4b8c-9853-37940fd48a1f

26/05/2026

https://www.otago.ac.nz/news/newsroom/building-the-bridge-between-discovery-and-impact

One Otago research alliance is determined to bridge the gap between research and real-world application for the rare disease community.

05/05/2026

Last week, the inaugural RARITY Symposium brought together our members to tackle a big question:

How do we turn rare disease research into real-world impact?

One thing became clear—New Zealand has the expertise. What we need is better connection.

From faster diagnoses through genomics, to the ongoing challenges patients face after diagnosis, the conversation highlighted a shift from the diagnostic odyssey to the therapeutic odyssey.

As one speaker put it:

“We might be experts in the biology—but we’re not experts on the patients.”

There’s real momentum building, with growing collaboration through Rare Disorders NZ, international links with ERDERA, and initiatives like the RARITY internship helping bridge the gap between research and reality.

Rare disease isn’t just a scientific challenge—it’s a systems challenge. And we want to help connect the dots!

Thank you to all of our speakers and attendees for making this such a valuable meeting.