Honouring our community. Elevating our stories. Supporting mental health and wellbeing.
Every year on 23 June, communities across the United States come together to recognise USA XLH Day. A moment dedicated to honouring the strength, resilience, and lived experience of people living with X‑linked Hypophosphataemia (XLH).
For XLH Australia, this international day is an important opportunity to stand in solidarity with our global community. It is more than an awareness event. It is a celebration of identity, connection, and the collective movement toward better care, better understanding, and better futures.
XLH is a rare, inherited condition that affects bones, teeth, mobility, and lifelong wellbeing. But behind the clinical definition is something far more powerful: a community of people who show courage every day, who advocate for themselves and others, and who continue to push for a health system that truly sees and supports them.
Today, we celebrate you.
💛 A Community Built on Strength and Solidarity
Across Australia and around the world, children, adults, parents, carers, clinicians, and allies form a vibrant and determined XLH community. Your stories of early signs missed, of navigating complex systems, of finding answers, of reclaiming your voice are the heartbeat of everything we do.
USA XLH Day is a reminder that:
- You are not alone
- Your experience matters
- Your wellbeing deserves care—body, mind, and spirit
Every conversation, every shared story, every moment of connection helps build a stronger, more informed, more compassionate community.
🎙️ Marking USA XLH Day With Something Special:
Launching Our New Podcast Episode on Transition
To honour USA XLH Day, XLH Australia is proud to launch a new episode of the Living With XLH podcast, focused on one of the most important, and often challenging, parts of the XLH journey:
Transition from paediatric to adult care.
This episode explores:
- what transition really feels like for young people and families
- the emotional and practical challenges of shifting into adult health systems
- the gaps that still exist and how we can close them
- the importance of continuity, empowerment, and culturally safe care
- lived experience insights that illuminate what good transition support should look like
Transition is a defining moment in the XLH journey, and too often, people feel unprepared, unsupported, or unheard. This episode brings those realities into the light and offers hope, clarity, and connection.
Launching it today is our way of honouring the global XLH community and reinforcing our commitment to improving care across the lifespan.
Access the podcast via: Apple Podcast, Spotify, Deezer, Pocket Casts and Amazon Music.
🧠 This Year’s Focus: Mental Health and Emotional Wellbeing
Living with a rare, lifelong condition like XLH can place a significant emotional load on individuals and families. The challenges are often invisible: navigating uncertainty, managing chronic pain, dealing with stigma or misunderstanding, and balancing the demands of treatment, work, school, and daily life.
This year, XLH Australia is shining a light on mental health, because:
- rare disease can be isolating
- chronic pain affects mood, sleep, and resilience
- dental and skeletal complications can impact confidence and social participation
- families often carry emotional and logistical burdens that go unseen
- access to mental health support is uneven, especially in regional areas
Mental health is health.
And supporting the emotional wellbeing of our community is essential to improving quality of life.
🌐 What XLH Australia Is Doing
This year, we are expanding our focus on mental health through:
- new mental health and wellbeing resources for children, adults, and families
- co‑designed content that reflects real lived experience
- guides for navigating mental health services across Australia
- tools to support emotional resilience, self‑advocacy, and coping strategies
- partnerships with clinicians and researchers to better understand the mental health impacts of XLH
These resources will be available on the XLHA website as part of our commitment to improving health literacy and empowering our community.
🌈 How You Can Celebrate USA XLH Day
Whether you’re living with XLH, supporting someone who is, or working in the health system, there are many ways to mark the day:
- share your story or a message of hope
- post a photo wearing purple or blue
- start a conversation about mental health in rare disease
- reach out to someone in the community
- take a moment for self‑care
- share XLHA resources to help raise awareness
- listen to and share the new podcast episode
Every action, big or small, helps build understanding and visibility.
🌱 Looking Ahead With Hope
USA XLH Day is a celebration, but it is also a call to action. Together, we are building a future where:
- mental health is recognised as a core part of rare disease care
- emotional wellbeing is supported across the lifespan
- clinicians understand the psychological impacts of XLH
- lived experience guides decision‑making
- no one feels alone in their journey
XLH Australia will continue to advocate, educate, and lead — with community at the centre of everything we do.
💬 A Message to Our Community
To every person living with XLH:
Your courage inspires us.
To every parent and carer:
Your advocacy changes lives.
To every clinician, researcher, and ally:
Your commitment drives progress.
To our whole community:
Today, we celebrate you — and we walk forward together.
Happy USA XLH Day.
23 June. Always with you. Always for you.