XLH Australia Inc - Public Page

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.

There are more than 6000 identified rare diseases — and XLH is one of them.Caused by mutations in the PHEX gene, XLH lea...
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.

Imagine a country of 300 million people — all living with a rare disease.XLH is part of this global community. It affect...
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.

5% of the world’s population lives with a rare disease.XLH is one of them — a rare genetic disorder that disrupts phosph...
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.

💥 300 million people worldwide live with a rare disease.Among them are individuals with X-linked hypophosphatemia (XLH) ...
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

Most people have never heard of X‑linked hypophosphatemia (XLH)… but for those living with it, XLH shapes every single d...
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.

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

🌟 Words can change the world! 🌟 Discover the new XLHA Inclusive Language Guide and supporting posters—your toolkit for ...
28/11/2025

🌟 Words can change the world! 🌟
Discover the new XLHA Inclusive Language Guide and supporting posters—your toolkit for respectful, empowering communication in the rare disease community.
Ready to make a difference? Subscribe and download your free resources now via the link in our bio or here:
Let’s celebrate diversity, challenge stigma, and build a future where every voice is valued.
Tag someone who inspires you to use inclusive language! 💬✨

💬 “I felt seen for the first time.”That’s the power of community.XLH Australia is here for every step of the journey — a...
28/11/2025

💬 “I felt seen for the first time.”
That’s the power of community.
XLH Australia is here for every step of the journey — and we’re just getting started.

🧍🏽‍♀️🧑🏾‍🦽🧑🏼‍🦯 Representation matters.XLH is part of the disability community — and we’re here to be seen, heard, and res...
25/11/2025

🧍🏽‍♀️🧑🏾‍🦽🧑🏼‍🦯 Representation matters.
XLH is part of the disability community — and we’re here to be seen, heard, and respected.
Join us in celebrating with pride.

📢 This , we’re asking:What barriers do people with XLH face — and how can we break them down?Share your thoughts. Tag y...
23/11/2025

📢 This , we’re asking:
What barriers do people with XLH face — and how can we break them down?
Share your thoughts. Tag your local MP. Let’s make change.

🧠 Did you know? XLH is a rare genetic condition that affects bones, teeth, and energy — but not our spirit.This , we’re...
21/11/2025

🧠 Did you know? XLH is a rare genetic condition that affects bones, teeth, and energy — but not our spirit.
This , we’re showing what strength really looks like.

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