Australian resources
Verified links to the hospitals, services and organisations that matter for Australians living with hypophosphatasia. Everything here has been checked, and where something does not exist in Australia, we say so.
Bone and mineral services in Australia
There is no dedicated hypophosphatasia clinic anywhere in Australia. HPP care happens inside existing bone, mineral and endocrine services. These are the ones we have been able to verify. All require a referral, and most have waiting lists.
Adult services
Royal Melbourne Hospital: Bone and Mineral Medicine
Disorders causing bone fragility and affecting bone and mineral metabolism. Referral by RMH form.
St Vincent's Hospital Sydney: Bone and Calcium Clinic
Bone and calcium disorders including osteoporosis, hyperparathyroidism and vitamin D disorders. Referral letter to a staff specialist.
Royal North Shore Hospital: Endocrinology, Diabetes and Metabolism
Accepts referrals for metabolic bone disorders including osteomalacia. Also runs a refracture prevention service.
Royal Brisbane and Women's Hospital: Endocrinology Bone Clinic
Metabolic bone disorders. GP referral required; specialist referral hotline available.
Children's services
Royal Children's Hospital Melbourne: Bone Health Clinic
Fortnightly multidisciplinary clinic with same-day bone density, physiotherapy and occupational therapy.
The Children's Hospital at Westmead: Bone and Mineral Services
Congenital and acquired bone and mineral disorders. Referral by letter to the endocrinologist.
Sydney Children's Hospital Randwick: Endocrinology and Diabetes
General paediatric endocrine service; no separately named bone clinic listed.
Queensland Children's Hospital: Endocrine Service
Statewide paediatric endocrine service. Referral through the hospital's refer-a-patient pathway.
Perth Children's Hospital: Endocrinology and Diabetes
Statewide paediatric endocrine service for Western Australia.
Women's and Children's Hospital Adelaide: Endocrinology and Diabetes
South Australia's paediatric endocrine service.
ANZSPED: full directory of paediatric endocrine units
The professional society's own list, covering every state and territory including regional centres. The best place to look if you are not near a capital city.
Help us keep this accurate
Hospital services are renamed, merged and moved constantly. If a link here is out of date, or you have been well cared for somewhere we haven't listed, please tell us. This directory is only as good as the community that maintains it.
Genetic services and counselling
Genetic testing and counselling for HPP is arranged through state and territory clinical genetics services, generally on referral from a specialist. Each state runs its own service, and access and cost vary.
Victorian Clinical Genetics Services
Victoria's clinical genetics and genomic testing service.
NSW Health Pathology: Genomics, rare diseases
Statewide genomic sequencing service with a rare disease stream.
Centre for Genetics Education
Plain-language fact sheets on genetic conditions, testing and inheritance, written for Australian families.
GSNV: directory of genetic services
Directory of genetic clinics and community services across Australia.
Australian support organisations
There is no other Australian hypophosphatasia organisation. These are the rare disease and bone health bodies whose work overlaps with ours, and who can help.
Rare Voices Australia
The national peak body for Australians living with a rare disease. Led the development of the National Strategic Action Plan for Rare Diseases and continues to steward its implementation. The key organisation for policy and advocacy.
Genetic Support Network of Victoria
Victoria-based but with national reach, GSNV maintains directories of genetic and rare disease support groups, genetic conditions and community services. A good first call if you are looking for peer support of any kind.
Australian and New Zealand Bone and Mineral Society
The professional society for bone and mineral clinicians and researchers in Australia and New Zealand. Publishes position statements and maintains a member directory, which is useful when trying to identify a specialist.
Soft Bones Australia
Us. We are building the first Australian community for people living with hypophosphatasia, their families and the clinicians who treat them. If you have HPP, care for someone who does, or want to help, please get in touch.
Genetic Alliance Australia
A long-standing not-for-profit connecting individuals and families affected by rare genetic conditions, including those without an existing support group.
Government services and funding
Life Saving Drugs Program
The Commonwealth program that funds asfotase alfa for perinatal- and infantile-onset HPP. Includes eligibility guidelines and the patient information page.
NDIS: eligibility and applying
Current access requirements. Note that access is based on functional impairment, not on a list of diagnoses.
NDIS: evidence of disability
What treating professionals need to provide, and in what form. Worth reading before your specialist writes anything.
Disability Support Pension: medical evidence
What Services Australia requires to assess a DSP claim.
Carer Payment and Carer Allowance
Support for someone providing daily care to a person with a disability or medical condition.
Pharmaceutical Benefits Scheme
The main subsidised medicines scheme. Asfotase alfa is not listed on the PBS.
JobAccess
Free workplace assessments and funding for equipment and modifications for workers with a disability.
HPP organisations overseas
HPP communities in other countries have built substantial resources over many years. Much of it is clinically relevant anywhere, but the funding, health system and legal content is specific to those countries and does not apply here.
Soft Bones (United States)
The largest HPP patient organisation in the world. Extensive fact sheet library, clinician education, webinars, peer support and a research grant program.
Soft Bones Canada
Canadian HPP organisation, with an “Ask the Experts” service and practical living-with-HPP material.
Soft Bones UK
UK charity founded by a parent of a child with HPP, with a clear plain-language explainer of the condition.
A note on treatment information from overseas sites
Which patients can access enzyme replacement therapy differs enormously between countries. Advice written for a family in the United States or the United Kingdom may not reflect what is available in Australia. Always check the Australian position. See funding in Australia.
Printable guides
We are preparing a small set of guides written for Australia, made to be handed to someone: a teacher, an emergency department, a GP, or a family who has just been given the diagnosis. They are with us for review and are not available yet.
Hypophosphatasia at school
For teachers, school leaders, education support staff and early-childhood educators. What staff may notice, the adjustments that cost almost nothing and change everything, how to include a student in PE rather than excluding them, what to do if a tooth comes out at school, and a one-page plan template.
Coming soon
Emergency and hospital card
The things an emergency department, a ward team or an anaesthetist most need to know, alongside space to fill in your own diagnosis, usual ALP, specialist, GP, medicines and emergency contacts.
Coming soon
A quick reference for Australian clinicians
When to suspect HPP in adults and children, a first-line investigation table, the mimics of a low ALP worth excluding, where to refer in each part of the system, and the current treatment funding position.
Coming soon
Newly diagnosed: where to start
A checklist for the first few weeks: what to ask for, what to write down, who you are likely to need on your team, the questions worth asking your specialist, and the practical and financial steps that are easy to miss.
Coming soon
Why they are not here yet
Anything we publish for schools, hospitals and clinicians needs a clinical and legal review before it goes out. That review is under way. If one of these would be useful to you, tell us which one and we will move it up the list.
What Australia doesn't have yet
We would rather tell you plainly than have you spend weeks searching for something that isn't there.
- No dedicated HPP clinic. Care sits within general bone, mineral and endocrine services.
- No Australian HPP patient registry. Nobody is systematically counting who is affected.
- No Australian prevalence study. Every figure quoted here comes from overseas.
- No advertised Australian ALPL test. Genetic testing is arranged case by case.
- No funded treatment beyond infancy-onset disease. Adults and later-onset children have no subsidised pathway.
- No national HPP peer support network. Building one is a founding priority.
All links checked August 2026. If you find one broken, please let us know.