XLH Australia Inc - Public Page

24/05/2026

🎶✨ Incredible talent, heartfelt gratitude ✨🎶

A huge thank you to the amazing Nat, Sofi & Karena — the talented trio behind “Bone Pain” — for your incredible performance at the XLHA 2026 Patient Education Weekend.

Your music, energy and passion brought something truly special to our weekend and created moments of connection, joy and reflection for our XLH community. 💜

We are incredibly thankful for your generosity in sharing your talent with us and helping make the weekend so memorable.

Thank you for being part of our XLHA family and for reminding us all of the power of music, community and lived experience. 🎤🎸💜

BeyondTheChart

09/05/2026

Happy Mother’s Day to all the incredible women in our XLH community!

Today, we celebrate the moms who wear many hats: caregiver, advocate, cheerleader, and warrior. Whether you are living with XLH yourself, raising a child with XLH, or both, your strength is the backbone of this community.

To the moms navigating the journey:
🌸The Appointment Queens: Who manage the specialists, the blood draws, and the infusions with grace.
🌸The Advocates: Who ensure their children are heard in classrooms and doctor’s offices alike.
🌸The Gentle Leaders: Who teach their kids that "different" is just another word for "strong."
🌸The Rare Warriors: Who manage their own symptoms while never missing a beat for their families.

Motherhood isn't always easy, and doing it with a rare condition adds a layer of resilience that is truly extraordinary. Today, we hope you find a moment to rest, recharge, and feel the immense love you give out every single day.

Drop a 🧡 in the comments to send some love to an XLH mom today!

30/03/2026

Let’s get behind Indygo 💜🇦🇺

One of our very own XLHers, Indygo, is absolutely smashing it 💪

For the past 10 years, Indygo has dedicated herself to athletics—competing at national championships and taking out the national title in Para ambulant javelin for three consecutive years. Incredible.

Now, Indygo has taken a brave step—changing classification to open new pathways to the international stage… and it’s already leading to something big.

✨ Indygo has been selected to compete at the Oceania Athletics Championships in seated Shot Put, Javelin, and Discus—with the possibility of making the Australian team 🇦🇺

This is a massive milestone, not just personally, but for our whole XLH community.

As many of us know, living with XLH doesn’t make things easy—yet Indygo continues to show what strength, resilience, and determination truly look like.

💫 Getting to this level comes with significant costs—travel, accommodation, competition fees, and training.

If you’re able to support, every contribution helps. And if not, sharing this post can make a huge difference.

Let’s rally behind Indygo and show what the XLH community is all about 💜

Hi everyone, My name is Indygo, I have been doing athletics for 10 year… Indygo Prebble needs your support for Indygo Road to Oceania Athletics Championships

08/03/2026

Happy International Women’s Day! 🌸✨

Today, we celebrate the strength, resilience, creativity, and achievements of women everywhere. From leaders and innovators to caregivers, artists, and everyday changemakers—women continue to shape our communities and our future in powerful ways.

Let’s take today to recognise the women who inspire us, support gender equality, and commit to building a world where every woman and girl has the opportunity to thrive. 💜

Here’s to empowering voices, breaking barriers, and lifting each other up—today and every day.

28/02/2026

⚖️ This Rare Disease Day, let’s take action for equity!

Fair access to diagnosis, treatment, care, and opportunities is a right—not a privilege—for everyone affected by rare diseases like X-linked hypophosphatemia (XLH). XLH Australia is calling on our community, healthcare providers, and policymakers to join us in advocating for improved standards of care and access to life-changing therapies.

Your voice matters—share, support, and demand equity for all!

🔗 https://rarediseaseday.org | https://xlhaustralia.com

25/02/2026

🤝 Rare Disease Day unites us all—patients, families, advocates, and healthcare professionals.

Living with XLH can be challenging, but together we can raise awareness, drive research, and improve lives.

XLH Australia believes in the power of community.

21/02/2026

✊ This Rare Disease Day, XLH Australia calls on YOU to join the movement for equity.

People living with XLH often face delays in diagnosis and barriers to accessing treatment.

Fair access to diagnosis, care, and therapies is essential for all rare disease patients.

Share, support, and demand change for XLH and all rare conditions!

19/02/2026

👧🧒 70% of genetic rare diseases, like XLH, start in childhood.

Children with XLH may face frequent surgeries, pain, and dental challenges, but with the right care and support, they can thrive.

XLH Australia provides resources and community for families navigating life with XLH.

Let’s advocate for a brighter future for every child living with a rare disease!

17/02/2026

🤔 Did you know XLH is caused by a mutation in the PHEX gene on the X chromosome?

This leads to phosphate wasting, which affects bones and teeth, often resulting in bowed legs, dental abscesses, and fatigue. XLH Australia is dedicated to raising awareness and supporting families affected by XLH.

Help us spread the word—share this post and help others learn about XLH!

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!