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.

💬 “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

đźź  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.
đź’Ą Introducing the XLH Transition Toolkit đź’Ą
âś… Step-by-step guidance
âś… Self-management checklists
âś… Tips for building your adult care team
âś… Support from XLH Australia every step of the way

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

đź“Ł Want to make a difference for people with XLH? âś… Share this post âś… Volunteer with XLH Australia âś… Support research and...
31/10/2025

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

💊 Treatment exists. Access doesn’t always.XLH is incurable—but it is treatable.We demand timely, affordable access for a...
30/10/2025

💊 Treatment exists. Access doesn’t always.
XLH is incurable—but it is treatable.
We demand timely, affordable access for all—regardless of postcode or income.

💔 “I was bullied for how I looked. I didn’t know it was XLH.”Living with a rare genetic condition can mean stigma, isola...
29/10/2025

💔 “I was bullied for how I looked. I didn’t know it was XLH.”
Living with a rare genetic condition can mean stigma, isolation, and emotional distress.
Let’s build a world where no one feels ashamed of their diagnosis.

👩‍⚕️ XLH requires multidisciplinary care including, but not limited to:Endocrinologists, dentists, orthopaedic specialis...
27/10/2025

👩‍⚕️ XLH requires multidisciplinary care including, but not limited to:
Endocrinologists, dentists, orthopaedic specialists, mental health support, and YOU.
Whole-person care isn’t optional—it’s essential.

⏱️ Early diagnosis = better outcomes.Symptoms often appear when a child starts walking—but many go undiagnosed for years...
27/10/2025

⏱️ Early diagnosis = better outcomes.
Symptoms often appear when a child starts walking—but many go undiagnosed for years.
If there’s a family history, newborns should be tested.
Let’s push for early, accurate diagnosis.

🦴 XLH isn’t just bowed legs or short stature.It’s chronic pain, fatigue, dental abscesses, hearing loss, and emotional d...
26/10/2025

🦴 XLH isn’t just bowed legs or short stature.
It’s chronic pain, fatigue, dental abscesses, hearing loss, and emotional distress.
It’s a lifelong condition—and it deserves lifelong care.

🧬 XLH = X-Linked HypophosphatemiaIt’s a rare genetic condition caused by a mutation in the PHEX gene, leading to phospha...
24/10/2025

🧬 XLH = X-Linked Hypophosphatemia
It’s a rare genetic condition caused by a mutation in the PHEX gene, leading to phosphate loss and lifelong challenges with bones, teeth, and more.
XLH affects approximately 1 in 70,000 births.
Let’s raise awareness. Let’s change lives.

🧬 Do you or a loved one live with a rare or undiagnosed condition?Your voice matters—and now it can shape real change in...
24/10/2025

🧬 Do you or a loved one live with a rare or undiagnosed condition?
Your voice matters—and now it can shape real change in Australia. 🇦🇺
💥 The Rare Barometer survey is open! It’s a global initiative by EURORDIS-Rare Diseases Europe, and if just 30 Australians complete it, the data will be shared with Rare Voices Australia to help improve diagnosis, treatment, and support right here at home.
đź•’ It takes about 20 minutes.
đź“Ł It could change lives.
🌏 It’s your chance to be heard.
👉 Take the survey now: https://bit.ly/rarebarometersurvey2025
Let’s show the world how strong, resilient, and united the Australian rare disease community is. 💪

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+61418369236

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