XLH Australia Inc - Public Page

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!

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