Contact Soft Bones Australia
Whether you have HPP, care for someone who does, treat patients with it, or want to help, we would like to hear from you.
Come and talk about living with HPP
If you are living with hypophosphatasia, or caring for someone who is, you are welcome to contact us simply to talk about it. That might be the pain and fatigue nobody can see, the years it took to get a diagnosis, the trouble with teeth, the school or work conversations, or the frustration of being told there is no funded treatment for you.
We cannot give medical advice, and we will always point you back to your own treating team for that. What we can do is listen, explain how the Australian system works, point you to the right service, and make sure your experience counts towards the case we are building.
Help us build this
Soft Bones Australia is new and there is a great deal to do. There is a place here for people with HPP and their families, for clinicians and allied health, and for anyone with skills to lend.
- Be counted. Tell us you are out there. Nobody in Australia is keeping track, and that is the first thing we want to change.
- Share your story so that other families recognise themselves in it.
- Join the advocacy work on treatment access, earlier diagnosis and Australian data.
- Volunteer your skills. Governance, fundraising, communications, events, peer support and clinical input are all needed.
- Connect us to someone. A clinician, a researcher, a journalist or another family.
What people usually contact us about
“I have HPP”
Telling us you are out there is the most valuable thing you can do. It shapes what we build, and it is the foundation of every argument we make on the community's behalf.
“My child was just diagnosed”
We cannot give medical advice, but we can point you to the right services, explain how the Australian systems work, and connect you with others where possible.
“I have a patient I think may have HPP”
We are happy to share what we know about Australian referral pathways and to point you to current clinical literature.
“I work in this field”
We want to hear from anyone working on rare bone disease, mineral metabolism, or rare disease health services in Australia.
“I want to help”
A new organisation runs on volunteers. Lived experience, clinical knowledge, governance, fundraising and communications are all useful.
“Something here is wrong”
Please tell us. A broken link, an outdated clinic, a claim that no longer holds. We would much rather know.
Please read before you write to us
We cannot give medical advice. We are not a clinical service and we cannot diagnose, interpret your test results, or tell you what treatment you should have. Those questions need your GP or specialist.
If this is a medical emergency, call 000. If you need urgent health advice, healthdirect is available 24 hours on 1800 022 222. If you are struggling and need someone to talk to, Lifeline is on 13 11 14.
We are a small volunteer organisation. We will reply as quickly as we can, but please allow a little time.