One community.
One rare condition.
A world of difference.
World HPP Day brings people together to raise awareness of hypophosphatasia, recognise the experiences of those living with HPP, and build a future where everyone affected is seen, heard and supported.
Rare doesn't mean invisible.
Hypophosphatasia (HPP) is a rare inherited condition that affects the development and maintenance of bones and teeth. Its effects can vary considerably from one person to another, and its signs and symptoms may be misunderstood or overlooked.
For individuals and families, the journey can involve searching for answers, navigating healthcare systems and explaining a condition that many people have never heard of. Awareness helps make those experiences more visible.
World HPP Day is an opportunity to share knowledge, celebrate the strength of our community and remind people affected by HPP that they are not alone.
Small moments can create lasting change.
Every conversation helps build a better understanding of HPP and the people who live with it.
Earlier recognition
Sharing reliable information can help more people recognise the signs of HPP and understand why appropriate clinical assessment matters.
Being understood
Personal experiences help others understand the realities of living with a rare condition, including challenges that may not be visible to the outside world.
Finding community
Connecting people and families can reduce isolation, create opportunities to learn from one another and strengthen advocacy for the future.
There are many ways to be part of World HPP Day.
You don't need to organise a big event to make a difference. Start with one conversation, one connection or one story.
Help spread the word
Share reliable information about hypophosphatasia with friends, family, colleagues and your wider community. Help more people understand what HPP is and why awareness matters.
Bring people together
Reach out to someone affected by HPP, connect with another family or start a conversation with your local community about rare conditions.
Help others understand HPP
Share educational resources with your networks and encourage respectful, informed conversations about diagnosis, care, treatment and lived experience.
Make your voice count
Tell your story if you feel comfortable, support rare disease advocacy, or get in touch with Soft Bones Australia to explore ways to contribute.
Help make HPP more visible.
Use World HPP Day as a starting point for conversations that continue long after October 30.
Local voices. Global impact.
HPP affects people and families around the world. By connecting across countries, cultures and healthcare systems, we can share knowledge, strengthen advocacy and help make the needs of the HPP community more visible.
HPP United is a global alliance of independent organisations and patient representatives working together to improve the lives of people affected by hypophosphatasia.
World HPP Day is a powerful reminder that, although our experiences and healthcare systems may differ, we share many of the same hopes for better understanding, care, research and support.
One global community, connected by a shared purpose.
Every Australian voice matters.
At Soft Bones Australia, we want people affected by HPP to know that their experiences matter. Building awareness starts with listening to individuals and families, understanding their needs and making sure their voices are part of the conversation.
Whether you live with HPP, care for someone who does, work in healthcare or research, or simply want to learn more, you can help us build a stronger community.
A future where people affected by HPP can:
- Be recognised and diagnosed as early as possible.
- Access appropriate care and treatment.
- Have their experiences heard and respected.
- Connect with informed, supportive communities.
- Benefit from continued research and collaboration.
Together, we make HPP more visible.
One story. One conversation. One connected community. Every effort helps move awareness forward.