We’re not here for symbolic victories—we’re here for action
Sallee Hobbs, founder and leader of the rare disease charity Hypoparathyroidism New Zealand (Hypopara NZ) shares her rallying cry to help “crank up the volume” on the story of many living with a rare disease in New Zealand. Where slow and stalled progress leave their community and country ‘falling behind’
Written by Sallee Hobbs, founder and leader, Hypoparathyroidism New Zealand (Hypopara NZ)
A report that roared
Picture this: May 11, 2023, the Grand Hall of Parliament buzzing with anticipation, I met Rachel, the first person with hypopara I had ever met in real life. We met for the first time to represent our group—putting our all into travelling down the country to be there for this important event. I was there, invited by MP Matt Doocey, as BERL (Business and Economic Research Limited) unveiled their Rare Disorders Insights Report: Pathways Towards Better Health Outcomes.
Rare Disorders Insights Report: Pathways Towards Better Health Outcomes.
It was a gritty snapshot of our reality, built from scraps of data and a scan of global studies. Starting from the bottom, we have nothing but now the nothing is documented.
Lost in the numbers: No one knows how many of us with hypoparathyroidism even exist here—the system doesn’t bother counting.
Blind spots: New Zealand’s disease classification is a relic, ignoring most rare disorders like they’re ghosts.
Falling behind: Our diagnosis game? Slower and shakier than other countries we’d call peers.
Medicine mirage: Pharmac, our drug gatekeeper, says “rare” means fewer than one in 50,000—leaving us stranded without funding for treatments we desperately need.
Download it yourself atRare Disorders NZ—it’s a wake-up call in black and white. Rare disorders aren’t simple colds; they’re complex beasts—debilitating, life-threatening, and hungry for coordinated care. Yet in New Zealand, we’re ping-ponged between doctors, misdiagnosed, or forgotten, turning into high-cost patients because no one drew us a map.
A strategy stalled
Late July 2024: In response to the recommendations in thePharmac Review Final Report 2022government agreed to the development of a strategy to improve the lives of people and families living with rare disorders. The Rare Disorders Strategy was our hard-fought win—a beacon after decades of shouting into the void. But Health New Zealand’s silence since its release is deafening. They won’t sit down with Rare Disorders NZ or our community to plot the next steps. It’s like handing us a treasure chest and swallowing the key. The health systems in a “reset,” they say—fine, but our lives can’t hit pause. This chaos is the perfect moment to build smart, cost-effective pathways for rare disorder care. Step one? Health New Zealand needs to commit to an implementation plan—yesterday.
Hope on the edge
Amid the frustration, there’s a spark. A new drug—the first ever for chronic hypoparathyroidism—just got the green light in Australia (PR Newswire, 2025). The supplier even put my face on an Instagram tile—a surreal nod to our fight. But here’s the sting: New Zealand’s not on the radar yet. We’re still waiting, noses pressed against the glass, for a breakthrough that’s so close we can taste it.
Your Revolution, Our Revolution
This is where you come in, RARE Revolution. Your 50 million readers in 2023 aren’t just an audience—they’re a movement. We’re begging you and your audience to help crank up the volume on our story. Hypopara NZ and Rare Disorders NZ are ready to team up—to share our scars, our wins, and our blueprint for change. New Zealand’s rare community is a wildfire waiting to ignite—will you toss us the match? Rare disorders might strike solo, but their battles echo worldwide: invisibility, inequity, the hunger to be seen. Let’s rewrite the script together. Join us—because this revolution won’t wait.
About the Author
Sallee Hobbs is the fierce group lead and founder of Hypoparathyroidism New Zealand (Hypopara NZ), fuelled by coffee and a passion to rewrite the rare disorder narrative in New Zealand. To get Involved: dive deeper at Rare Disorders NZ or reach out to Hypopara NZ—let’s make some noise.
Visit https://hypoparanz.wixsite.com/hypoparanz
