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XLH Australia Inc - Public Page

Our aim is to promote community awareness of XLH as well as provide support, education and information for affected families and medical professionals.

15/02/2026

🌟 Rare Disease Day (28 February) is about shining a light on conditions like X-linked hypophosphatemia (XLH)—a rare genetic disorder that causes low phosphate levels, leading to bone pain, dental problems, and growth issues.

XLH can affect both children and adults, and early diagnosis is key to better outcomes.

Share your XLH journey or tag someone who inspires you—let’s show the world the strength of our community!

14/02/2026

🌟 BEYOND THE CHART — XLH PATIENT WEEKEND 2026 🌟

What if the things that matter most never make it onto a medical chart?
For Australians living with XLH, numbers only tell part of the story. A chart might show low phosphate or fragile bones — but it won’t capture the chronic pain, the surgeries, the mobility struggles, or the relentless resilience behind every single day.
This year, we’re changing that.

💛 From 22–24 May 2026, at the Novotel Sunshine Coast, XLH Australia is bringing “Beyond the Chart” to life.
Join patients, families, clinicians, and advocates as we shift the focus from symptoms to stories, and from clinical data to real human experience.

Because people with XLH are not case notes.

They’re parents, kids, workers, dreamers, fighters — and their lived experience must shape the care, treatment access, and policies that define their futures.
It’s time to let voices speak louder than charts.
It’s time to make the invisible visible.
It’s time to go Beyond the Chart.

✨ Come connect, learn, recharge, and be heard.

Together, we’ll amplify stories, spark change, and build a better future for Australians living with XLH.

📅 Event Details
Dates: 22–24 May 2026
Venue: Novotel Sunshine Coast
Cost:
• XLHA subscribers: $80pp or $150 per family of four
• Non‑subscribers: $150pp or $250 per family of four
(Accommodation, networking event & education day included)
RSVP by 27 April 2026

🔗 Register now: https://forms.office.com/r/JQiWax1vCr
🔗Subscribe to XLH Australia: https://xlhaustralia.com/resources-and-links/
📧 Contact: xlhaustralia@gmail.com

This event is supported by an independent medical education grant from Kyowa Kirin Australia.

We can’t wait to see you there — and to go together. 💛

13/02/2026

👶 70% of genetic rare diseases begin in childhood.

For families living with XLH, this means facing challenges from an early age—bowed legs, dental abscesses, pain, and frequent surgeries. XLH Australia provides resources and support for children and families navigating the journey from paediatric to adult care, ensuring no one faces XLH alone.

🔗 rarediseaseday.org | xlhaustralia.com

11/02/2026

🧬 72% of rare diseases are genetic—including X-linked Hypophosphatemia (XLH), which is caused by a mutation in the PHEX gene on the X chromosome.

XLH affects both children and adults, leading to bone pain, dental issues, and growth challenges. XLH Australia works to raise awareness, educate, and connect families affected by XLH and other rare genetic conditions.

🔗 rarediseaseday.org | xlhaustralia.com

09/02/2026

🌈 Rare Disease Day is just around the corner.
Did you know there are more than 6000 identified rare diseases affecting millions worldwide? One of these is X-linked hypophosphatemia (XLH)—a rare, inherited disorder that causes low phosphate levels, impacting bones, teeth, and overall health.

XLH Australia is here to support and advocate for those living with XLH and other rare conditions.
🔗 Learn more: rarediseaseday.org | xlhaustralia.com

08/02/2026

There are more than 6000 identified rare diseases — and XLH is one of them.
Caused by mutations in the PHEX gene, XLH leads to chronic pain, bone deformities, and fatigue.
We’re raising awareness to ensure no one walks this path alone.

07/02/2026

Imagine a country of 300 million people — all living with a rare disease.
XLH is part of this global community. It affects children and adults, often invisibly, but always profoundly.
This Rare Disease Day, we amplify the voices behind the numbers.

05/02/2026

5% of the world’s population lives with a rare disease.
XLH is one of them — a rare genetic disorder that disrupts phosphate regulation, leading to rickets, dental issues, and mobility challenges.
Let’s raise awareness and push for earlier diagnosis and better care.

03/02/2026

💥 300 million people worldwide live with a rare disease.
Among them are individuals with X-linked hypophosphatemia (XLH) — a lifelong genetic condition that weakens bones, causes pain, and often goes undiagnosed.
This Rare Disease Day, we stand with every rare voice.
🔗 rarediseaseday.org | xlhaustralia.org.au

31/01/2026

Most people have never heard of X‑linked hypophosphatemia (XLH)… but for those living with it, XLH shapes every single day.
XLH is a genetic, lifelong rare disease that affects the way the body handles phosphate — a mineral essential for strong bones, teeth, and muscles.
When phosphate levels stay low, the body can’t keep up. That means:
• bone pain and fractures
• bowed legs or skeletal differences
• dental abscesses
• fatigue that hits like a wall
• mobility challenges
• symptoms that continue into adulthood
XLH isn’t caused by diet. It isn’t something you “grow out of.”
It’s a hereditary condition caused by mutations in the PHEX gene, and it affects children and adults across Australia.
This Rare Disease Day (28 February 2026), we’re raising awareness so more people get diagnosed earlier, treated sooner, and supported better.
💬 Have you or your family been impacted by XLH? Share your XLH story below — your voice helps others feel seen.

30/11/2025

🙌 What a week!
Thank you to everyone who shared, spoke up, and stood with us during .
The movement doesn’t end here — let’s keep building a future that includes us all.

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Melbourne, VIC

Telephone

+61418369236

Website

https://xlhaustralia.com/

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