FOP Australia is happy to share this year’s annual report and thank everyone who has contributed to the work of this organisation in the last financial year.

The full report is accessible here.

The International Clinical Council on FOP released an updated version of the treatment guidelines in July 2024. This is the first full update since 2019.

Read the International FOP Association summary of updates here.

The full copy of the guidelines is available here, and at the link on the top of every page on our website. We encourage you to share this with your doctors and other clinicians involved in the care of FOP.

We are excited to share that the Australian Therapeutic Drug Administration has approved the first ever treatment for Fibrodysplasia Ossificans Progressiva!

Palovarotene capsules (Sohonos) have been approved for use in adults and some children (females 8 years of age or older, males 10 years of age or older) who have FOP. This means that palovarotene is now approved for use, though processes for reimbursement and getting supply of the drug will still need to be developed.

If you have FOP, palovarotene may or may not be an option for you – we encourage you to discuss the potential benefits and side effects, and your individual circumstance, with your treating doctor (particularly with clinical trials of other developing drugs currently open for enrolment in Australia and New Zealand; see trial sites listed at https://fopaustralia.org/updated-clinical-trial-resources/).

This announcement is possible because of clinical trials around the world, including Australia, relying on people with FOP undergoing trial and placebo therapy. The studies showed that palovarotene can possibly have some effect on stopping extra bone formation (heterotopic ossification). We would like to acknowledge the generosity and efforts of all the people who participated in these trials, and their families and research teams, for making this milestone  possible.

Representatives from FOP Australia and Ipsen will be meeting in the coming days, and we look forward to sharing further posts about this announcement. The TGA listing is publically available at:

https://www.tga.gov.au/resources/artg/394001

*Edited 1/12/23 to emphasise that processes for supply and reimbursement of the drug within Australia are still to be developed*

FOP Australia are proud to share our Annual Report for 2022/2023. This includes an overview of our achievements and challenges, financial statements, a report from our IFOPA International Presidents’ Council representative, and a summary of the year in medical research.

We are especially to proud to share the news that because of the generosity and support of people throughout Australia and New Zealand, FOP Australia has again been able to allocate funds from FY23 to:

• Supporting the IFOPA In Pursuit of.a Cure campaign for gene therapy research
• Contributing to the IFOPA ACT for FOP competitive research grant program
• Continuing support for the Shore Lab at University of Pennsylvania, and their ongoing foundational science research
• Planning a future Australia/New Zealand patient gathering (for the first time since 2016!)
• Funding the Support Grant Program
• Funding the Oliver Collins Education Grants
• and of course, a small amount (5%) goes towards operational costs to keep our organisation running in accordance with ACNC and other regulatory requirements.

We look forward to the opportunity to discuss this report with members at the Annual General Meeting on Monday 9th October at 8pm AEST. Notice of the AGM has been sent to all members via email (please contact info@fopaustralia.org to confirm your contact details if you are a member who has  not yet received this) .

Thank you to everyone who has contributed in any way to the work of our charity to support people with Fibrodysplasia Ossificans Progressiva. Apart from the financial contributions above, we hope that by creating opportunities for connecting people we can foster a supportive network for people with FOP in Australia and New Zealand.

The FOP Australia Annual Report for the 2021/2022 financial year is now publicly available online our website.  This was distributed to all members in December 2022, in anticipation of the Annual General Meeting. We also redistributed the 2020/2021 Annual Report with updates and addendums  based on member feedback received last year.

Thanks for taking the time to read about FOP Australia’s activities and achievements. These and all  previous Annual Reports are available  here.