Community stories
HPP is rare enough that most people who have it have never met anyone else who does. These pages are where that changes.
Community stories are coming soon
This organisation is new, so there is nothing here yet. Please join us and let us feature your story.
Adults diagnosed late
People who spent years with unexplained fractures, pain or fatigue before anyone joined the dots, and what finally getting an answer changed.
Parents and carers
Families whose child was diagnosed as a baby or a toddler, on what the first year was like and what they wish someone had told them.
Clinicians
Australian doctors and dentists on how they came to recognise HPP, and what they would say to a colleague who has never seen it.
How it works
Deliberately simple, and at whatever pace suits you.
You get in touch
A short message through the contact form is enough. You do not need to have anything written.
We have a conversation
By phone, video or email, whichever you prefer. If it is easier, we can ask questions and write it up from your answers.
You review the draft
Nothing is published until you have read it and said yes. Change anything you want changed.
You choose how it appears
Name or anonymous, photo or none, full story or a short extract.
It stays yours
Ask us to take it down or amend it at any point, and we will.
Prompts, if a blank page is hard
What were the first signs something was wrong? How long did it take to get an answer, and what happened in between? What did you get told before HPP was mentioned? What changed after the diagnosis, for better or worse? What do you wish a doctor had asked you sooner? What would you say to someone who has just been diagnosed?
Connecting with other Australians
One of the hardest parts of a rare condition is the isolation. Most Australians with HPP have never spoken to another person who has it.
Building a national peer network is one of our founding priorities. We are not going to pretend it exists yet, but it will only exist if people put their hand up, so if the idea appeals, tell us.
What we're working towards
- One-to-one peer connection, matching people with someone at a similar stage or with a similar experience
- Online meet-ups for patients, and separately for parents and carers
- A private community space where people can ask questions without an audience
- A national gathering, once there are enough of us to fill a room
In the meantime
International HPP communities are well established and welcoming, and several already include Australian members. If you would like to connect with others now rather than wait, these are worth looking at:
- Soft Bones (United States), which runs an online community with country-specific spaces, including one for Australia
- Soft Bones Canada, which runs a community and expert Q&A
- GSNV support group directory, covering Australian rare disease groups more broadly
Bear in mind that treatment and funding information on overseas sites reflects those countries' health systems, not Australia's.
Reviewed August 2026.