Milestone announcement: First ever FOP treatment available on the PBS from 1st September 2025

Published: August 23, 2025  ~   0

The 2025 FOP Australia Conference opened today, 23rd August, with a milestone announcement for care of Fibrodysplasia Ossificans Progressiva in Australia by the Minister for Health, Hon Mark Butler MP. Minister Butler has announced that on 1st September, palovarotene will become the first FOP treatment available on the PBS. This will enable subsidised supply to eligible patients throughout Australia.

We would like to acknowledge the generosity and commitment of people living with FOP and their families who contributed their stories to advocate for the ability for others to have the choice of treatment for the first time ever. In hearing their stories, PBAC noted the high and urgent need for treatments for FOP. This PBS listing will also raise the profile of FOP significantly, including in our government and amongst clinicians. It will also help pave the way towards access for future treatments.

It will be more important than ever for clinicians to learn how to recognise FOP, and to learn when palovarotene should be considered and how to use it safely. As part of today’s conference we will have international experts giving guidance on these topics, and many more.

Join us online via links at: https://fopaustralia.org/2025meeting/

Picture: Hon Mark Butler MP, Minister for Health, Australian Government.

New FOP research project launched by CaPPRe/FOP Australia

Published: August 21, 2025  ~   0

FOP Australia are excited to be starting work with CaPPRe (Community and Patient Preference Research) on a project to better understand the needs of people living with Fibrodysplasia Ossificans Progresiva in Australia and New Zealand. We plan that this will help inform our future efforts to advocate for access to services and/or treatments. See more at: https://fopaustralia.org/cappreproject/

 We also encourage people living with FOP in Australia and New Zealand to enrol in the international FOP Registry to keep building global understanding of what FOP is, and how to better help people living with it.

It is also exciting to hear about the Genomics of Rare Disease Registry being established by the Garvan Institute of Medical Research, which aims to help the understanding and identification of rare diseases. They are seeking input from people with many rare diseases, including FOP. You can learn more in this information sheet, or at their website.

Learn more about FOP research in the ‘Understanding FOP’ section of this website, and at the International FOP Association website.

2025 FOP Australia Conference: Online platform now LIVE

Published: August 16, 2025  ~   0
FOP Australia is preparing to bring Australians and New Zealanders with Fibrodysplasia Ossificans Progressiva together, along with clinicians and researchers, for the first time in almost a decade.  The 2025 FOP Australia Conference program is packed with opportunities for everyone to learn more about FOP, treatment and tools either in-person or online on the 22nd-24th August.

For those who can’t attend in-person at the Holiday Inn Express Southbank in Melbourne, we will be live-streaming all sessions on Saturday 23rd and Sunday 24th. And all attendees can check out the latest program details, speakers resources on our Zoom conference platform, which is now live! (If you have already registered for the conference, you should have already received a Zoom link to access the online platform, and do not need to register again)

To register online: You can register directly at the Zoom platform
To register to attend in-person: Please use the forms here, where there is also more detail about what financial assistance you can access to attend the conference.

Meeting details for the private family/clinician meetings on Friday 22nd have been emailed to each individual family directly (including dial-in links). Please get in touch if you have any questions about these sessions.

The conference Welcome and Display Area will be open from 11am on Friday at the conference venue, with displays of resources and information, and opportunities to learn about and contribute to research projects advancing care for FOP. This will include a new FOP Australia project designed to help strengthen our advocacy and lobbying ability.

2024/2025 Annual Report

Published: August 3, 2025  ~   0

The 2024/2025 FOP Australia Annual Report is now available online here and summarises our organisation’s activities during a year which brought many new challenges and opportunities.

As we prepare for our first national gathering in almost a decade, and go through the process of PBAC review of palovarotene as the first ever FOP treatment, we also celebrate the ongoing amazing fundraising efforts throughout our community.

This report has also been emailed directly to all listed members. If you have not received this, please contact info@fopaustralia.org to update your details.

And to stay up to date with news throughout the year, please follow FOP Australia on Facebook, Instagram or LinkedIn.