XLH Australia Inc - Public Page

04/10/2025

XLH impacts more than bones—it affects minds and hearts too.
• 67% say their mental health is significantly impacted by XLH
• 65% struggle with big life decisions, like having children
You’re not alone. Let’s talk mental health and support each other.

04/10/2025

💙 It's Mental Health Week. Living with XLH means facing more than just physical challenges.
Did you know:
• 41% of people with XLH report clinical depression
• 24% have had suicidal thoughts
• 22% have self-harmed
• 76% have experienced bullying
Mental health matters. Let’s break the stigma and support each other!
If you need help, reach out to Lifeline (13 11 14) or visit www.xlhaustralia.com for resources.

10/08/2025

Grab your copy of our children’s book, Ethan the Brave, that celebrates the resilience and courage of children with X-linked Hypophosphatemia (XLH).

Through Ethan’s journey, children will learn that everyone has their own unique strengths and that true bravery comes from within.

Discover the heartwarming tale of “Ethan the Brave,” a beautifully illustrated children’s book that celebrates the resilience and courage of children with X-linked Hypophosphatemi…

04/08/2025

Day 2: great presentations from some of our amazing Doctors.

04/08/2025

Representing the XLHA community at the ANZSPED Conference 2025. We are so lucky to have amazing medical professionals.

27/07/2025

🌟 Join XLH Australia: Empowering Lives Together 🌟

Become a member of XLH Australia for just $15 a year per individual or $20 a year per family and unlock a world of resources, support, and community. Your membership grants you access to exclusive educational materials, mental health initiatives, advocacy efforts, and more. Together, we can make a difference in the lives of those affected by X-Linked Hypophosphatemia (XLH).
Join us today and be part of a community that cares. Your support matters!

Visit: www.xlhaustralia.com/xlh/become-a-member/ to subscribe.💙

22/06/2025

🌟 Today is XLH Awareness Day (US) 🌟
Join us as we shine a light on X-linked Hypophosphatemia (XLH) — a rare, lifelong condition that affects bones, muscles, and so much more.

💪 People living with XLH face unique challenges every day — but they also show incredible strength, resilience, and community spirit.

📢 Let’s raise awareness, share stories, and stand together in support of those living with XLH. Every voice counts. Every story matters.

Photo: XLHA Patient Education Weekend, Feb 2025

28/03/2025

🎙️ 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 a speaker at the 2025 XLHA Patient Education Conference!

Luke’s expertise in exercise and medicine will provide valuable insights into how movement can support the health and well-being of people with XLH. We can’t wait to learn from him!

🎧 Join us as we chat with Luke Snabaitis about the vital connection between Movement as Medicine—what it means for people with XLH and how movement can be a powerful tool for well-being.

🎧 Available on the following links:

Spotify:
https://open.spotify.com/episode/33VcgZWsfXkpFbB5xmM3um?si=hE9n5tbyRcCkkzoLbXOd_A

Pocketcasts
https://pca.st/k8zvfr3m

Deezer
https://deezer.com/show/1001757621

Amazon Music
https://music.amazon.com.au/podcasts/5e554fc0-8e3a-460a-80bf-5eb0cba94894/episodes/7eefb72e-0efc-4d94-bbe1-c9e0834a0c43/living-with-xlh-living-with-xlh—movement-as-medicine

Apple Music
https://podcasts.apple.com/us/podcast/living-with-xlh/id1775017070

Podcast Index
https://podcastindex.org/podcast/7134395

Listen Notes
https://www.listennotes.com/podcasts/living-with-xlh-xlh-australia-inc-2gWZ1eOyafE/

18/03/2025

OTHER RARE BONE CONDITIONS - XLH & OI
Because some of the other rare bone conditions are very rare or very little known, OIFE can play a role in creating awareness and spreading information about these conditions, which very often have a lot of commonalities with OI.

In the previous OIFE Magazine we interviewed Tenna Toft Sylvest from the XLH The International XLH Alliance about the similarities and differences between XLH and OI.

Quote Tenna:
"Although OI and XLH as a condition is very different, we have many similarities – where I think bone pain and deformities, dental issues, hearing loss are the most obvious ones. In many countries we also see the same experts and there is a lot of valuable in learning from each other when it comes to management and care."

Read the whole interview here: https://oife.org/2025/02/07/other-rare-bone-diseases-than-oi-xlh/

03/03/2025

RVA Partner, Maddie Riewoldt's Vision (MRV), is celebrating 🌟National Bone Marrow Failure Syndrome Awareness Week from March 3 – 9. The campaign aims to raise awareness of Bone Marrow Failure Syndromes and their life-threatening impact on thousands of families across the country, whilst also encouraging Australians to donate blood and stem cells. You can download the social media pack on MRV’s website to help spread the word. 💜

02/03/2025

The XLH Network, Inc. XLH Community Impact Survey outcomes.

Living with a rare disease as a child can be a scary experience. The Survey found that children with experience anxiety and fear, including concerns related to needle phobia, physical appearance, or needing to find a new doctor.

Learn more about the lived experiences of XLH. Read and share Insights for Change: https://www.xlhimpact.com/assets/XLHCommunityImpactSurvey_WhitePaper_September2024.pdf, a report from the XLH Community Impact Survey.