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.

🙌 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.

🧡 Disability Action Week isn’t just about visibility — it’s about action.XLH Australia is calling for better access, ear...
18/11/2025

🧡 Disability Action Week isn’t just about visibility — it’s about action.
XLH Australia is calling for better access, earlier diagnosis, and inclusive care.
Because every rare voice matters.

💬 “Disability isn’t a deficit. It’s a different way of being.”As we count down to , we’re spotlighting stories that shi...
15/11/2025

💬 “Disability isn’t a deficit. It’s a different way of being.”
As we count down to , we’re spotlighting stories that shift the narrative.
Got a story to share? DM us or tag

🟠 What does mean to you?At XLH Australia, it’s a time to amplify voices, challenge assumptions, and celebrate strength...
15/11/2025

🟠 What does mean to you?
At XLH Australia, it’s a time to amplify voices, challenge assumptions, and celebrate strength.
Stay tuned — we’ve got something powerful coming.

🔥 Big shoutout to Evie — our fundraising superstar! 🔥Thanks to her sizzling efforts at Silkwood School, Evie raised more...
10/11/2025

🔥 Big shoutout to Evie — our fundraising superstar! 🔥
Thanks to her sizzling efforts at Silkwood School, Evie raised more than $400 for XLH Australia through a school sausage sizzle 🌭💛. Her heart, hustle, and commitment to the XLH community are nothing short of inspiring.
Evie’s actions aren’t just generous — they’re generational. The funds she raised will help create vital resources for young people transitioning from paediatric to adult healthcare, making sure no one walks that path alone 💪✨.
Let’s hear it for Evie — proof that one student, one idea, and one sausage sizzle can spark real change.

🚨 NEW RESOURCE ALERT 🚨 Growing up with XLH? The move from paediatric to adult care can feel overwhelming — but you don’t...
31/10/2025

🚨 NEW RESOURCE ALERT 🚨
Growing up with XLH? The move from paediatric to adult care can feel overwhelming — but you don’t have to do it alone.
💥 Introducing the XLH Transition Toolkit 💥
✅ Step-by-step guidance
✅ Self-management checklists
✅ Tips for building your adult care team
✅ Support from XLH Australia every step of the way

Whether you're 12 or 25, this toolkit is your roadmap to confident, empowered healthcare. 🔗 Become a member to download now: www.xlhaustralia.com/xlh/become-a-member/
💬 Tag a friend, share with your GP, and help us spread the word!

📣 Want to make a difference for people with XLH? ✅ Share this post ✅ Volunteer with XLH Australia ✅ Support research and...
31/10/2025

📣 Want to make a difference for people with XLH?
✅ Share this post
✅ Volunteer with XLH Australia
✅ Support research and advocacy
Together, we can rewrite the story of XLH.

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