Information for patients living with, and clinicians caring for patients with, X-linked Hypophosphatemia
What if the things that shape your life the most never make it into your medical record? For Australians living with X‑Linked Hypophosphataemia (XLH), this is the frustrating truth. A chart might mention low phosphate or weak bones. It won’t capture the pain that lingers long after appointments end. It won’t record the surgeries. It … Continue reading Beyond the Chart: Why the Real Story of XLH Has Never Been Written Down
A wellbeing planner built by the XLH community, for the XLH community, is finally here — and it’s changing the way people with rare, chronic conditions care for their mental and emotional health. If you’ve ever lived with a chronic or rare condition, you know the truth: the emotional load is often heavier than the … Continue reading 🌿 The XLHA Wellbeing Planner Is Quietly Transforming Rare Disease Care — And People Are Talking About It
Words matter. At XLH Australia, we know that language shapes how we see ourselves and each other. That’s why we’re excited to launch our new XLHA Inclusive Language Guide—a resource designed to help everyone in our community communicate with respect, dignity, and empowerment. Alongside this guide, we’re unveiling two vibrant posters that make inclusive language … Continue reading Building a More Inclusive Future: Discover XLH Australia’s Inclusive Language Guide & Posters
Disability Action Week (23-30 November 2025) is almost here — and XLH Australia is ready to Communicate. Connect. Create. This year’s theme is more than a slogan. It’s a call to action, and we’re answering with heart, hustle, and a whole lot of community power. And the theme (Communicate. Connect. Create) couldn’t be more aligned … Continue reading 💬 Communicate. Connect. Create. — XLH Australia’s Rally Cry for Disability Action Week
When it comes to fundraising, few things beat the humble sausage sizzle — and few fundraisers shine brighter than Evie from Silkwood School. With a grill, a goal, and a whole lot of heart, Evie turned a school lunch into a movement for health equity. 🔥 Evie’s Sizzle for Support raised more than $400 for … Continue reading 🌭 One Sizzle, Big Impact: How Evie Raised $400 for XLH Australia
National Carers Week is here—and at XLH Australia, we’re rolling out the blue carpet for the unsung heroes who make our community strong: the carers. Why XLH Carers Deserve the Spotlight Imagine juggling medical appointments, advocating for rare disease awareness, and being the emotional anchor for someone living with XLH—all while managing your own life. … Continue reading XLH Australia: Celebrating the Real Heroes of National Carers Week
Let’s be honest: mental health isn’t just a buzzword or a box to tick once a year. It’s something we all wrestle with—sometimes quietly, sometimes out loud. In the lead up to World Mental Health Day, XLHA wanted you to know: you’re not alone, and your story matters. Why This Matters—To All of Us If … Continue reading XLHA walking beside you in the lead up to World Mental Health Day
The XLHA Podcast is Back! After an incredible XLH Australia Patient Education Conference Weekend 2025, we’re excited to continue our podcast series, Living with XLH. We’re also thrilled to welcome our special guest, Luke Snabaitis, Advanced Exercise Physiologist & Co-Chair of the International Clinical Exercise Physiology Network. XLHA was also honoured to have Luke as … Continue reading New podcast episode available