Empowering Australians living with hypophosphatasia
Clear information, local care pathways and a national community for people with HPP, the families beside them, and the clinicians who care for them. Soft Bones Australia's purpose is to connect people affected by HPP right across the country, and we would love for you to join us.
Want to meet others living with HPP?
Join our next Zoom meet-up →
Figures are drawn from international peer-reviewed research and patient registry data. There is currently no Australian prevalence study for hypophosphatasia. Reviewed August 2026.
I am a…
Patient or carer
Understand the symptoms, find a specialist near you, and get practical help with school, work, the NDIS and daily life.
Support and daily living →Clinician or health professional
When to suspect HPP, how to interpret a persistently low ALP, which tests to order, and where to refer in Australia.
Diagnostic guidance →Advocate or researcher
Where the evidence gaps are, what we are campaigning for, and how to work with us on Australian HPP research.
Research and advocacy →Why we exist
Soft Bones Australia exists to raise awareness of hypophosphatasia across Australia, to give patients, families and clinicians information they can trust, and to make sure no Australian has to work out this condition alone.
Raise awareness
Make HPP recognised by the public, by GPs and dentists, and by the health system, so that it is found sooner.
Inform clearly
Provide accurate, plain-language information for patients, families, clinicians and researchers, written for Australia.
Connect people to care
Link Australians to local diagnostic pathways, hospitals, specialists and support services in their own state.
Advocate
Push for earlier diagnosis, better access to treatment, and equitable care for a rare condition that is easy to overlook.
Build a community
Create a national community so that people living with HPP in Australia can find each other.
Be transparent with people
Say plainly what exists in Australia and what does not, rather than leaving families to discover the gaps themselves.
What is hypophosphatasia?
Hypophosphatasia, or HPP for short, is a rare inherited condition in which the body does not make enough of a working enzyme called alkaline phosphatase. That enzyme is what allows bones and teeth to harden properly.
Without it, minerals do not lock into the skeleton the way they should. Bones can stay soft, break easily and heal slowly. Teeth can loosen and fall out with the roots still attached. Many adults live with deep, persistent bone and muscle pain long before anyone works out why.
HPP is caused by changes in a single gene, ALPL. It affects people across an enormous range, from babies who are critically unwell from birth, to adults whose only sign is losing teeth early, to people who never develop symptoms at all.
Read the full explainerWhen should someone ask about HPP?
- A blood test showing low alkaline phosphatase (ALP) that stays low on repeat testing
- Baby teeth lost before age five with the root still attached
- Repeated foot (metatarsal) stress fractures in an adult
- Fractures that are slow to heal or do not join
- Long-standing bone, joint and muscle pain with no clear cause
- Rickets-like changes in a child whose calcium and vitamin D are normal
Any one of these can have other explanations. Together, or alongside a low ALP, they are worth raising with a GP.
Your pathway to HPP care in Australia
Most Australians reach a diagnosis through the public system, starting with their GP. Here is the route, step by step.
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Talk to your GP
Ask for a total serum alkaline phosphatase (ALP) test, and ask that the result be read against the range for your age and sex, not the adult range.
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Confirm the pattern
A single low reading is not enough. HPP is suspected when ALP is persistently low and other causes have been ruled out. Vitamin B6 and urine tests help confirm it.
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Ask for a specialist referral
Children are usually referred to a paediatric endocrinology or bone service; adults to a bone and mineral or metabolic bone clinic at a major hospital.
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Consider genetic testing
Testing the ALPL gene can confirm the diagnosis and help the rest of the family. It is usually arranged through a clinical genetics service.
Australians with HPP are falling through the gaps
Enzyme replacement therapy exists and is registered in Australia. But Commonwealth funding reaches only the smallest group of patients: babies whose disease begins before six months of age.
Children diagnosed later, and every adult living with HPP, currently have no subsidised pathway to that treatment. Alongside long diagnostic delays and the absence of any Australian data on how many people are affected, that is what we are working to change.
We are looking for Australians living with HPP who are willing to share their story, in their own words and on their own terms.Your story could be hereCommunity stories help other families recognise HPP sooner, and show decision-makers who is affected.
Practical help, built for Australia
Find a specialist
Bone and mineral services at major hospitals in every state, and how to get referred.
Clinic directory →NDIS and Medicare
What HPP-related support you may be able to access, and how the systems actually work.
Funding and support →Dental care
Why HPP affects teeth, what to watch for in children, and how to find the right dentist.
Dental guidance →Medicines to discuss
Some common bone medicines are generally avoided in HPP. Know what to ask before starting one.
Treatment cautions →Are you interested in speaking with others who understand HPP?
Register your interest below and we will invite you to our next Zoom meet-up for people living with hypophosphatasia, and the families who support them.