TGA approves palovarotene as the first FOP treatment available in Australia

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*


Updated clinical trial resources

With multiple clinical trials now open for enrolment for people in Australia and New Zealand, it is an exciting time for the FOP community.  This is exciting progress in just a small number of years since the first ever FOP clincial trial! It represents the generosity and commitment of the FOP community, and amazing work by researchers around the world – thank you to everyone who has helped make  this possible.
To help keep track of developments, the International FOP Association have developed a global map of trial sites so that people with FOP and their health care teams can know what options are available to them. This includes sites in Australia and New Zealand. Please contact the trial sites directly with any questions about the trials. Even if you think you may not be eligible/able to enrol, if you are interested in enrolling we encourage people with FOP to discuss your individual circumstances with the trial sites, and your treating health care teams.
If you are having trouble finding site contact details, let us know via info@fopaustralia.org and we will do our best to assist.
See also: Clinical Trials page for more links.

2024 Calendars available now!

We are very excited to help launch the Jack’s Movement 2024 Wildlife Photography Calendars at https://fopaustralia.org/fundraising/calendars
These A4 wall calendars feature exclusive wildlife images taken by Jack, who is 17 years old and lives with Fibrodysplasia Ossificans Progressiva. Following the success of his 2023 fundraising calendars, Jack was the inaugural recipient of the Oliver Collins Education Grant in 2023, and used the grant to continue to build his photography skills. With thanks to Jack, and his parents Rory and Melissa, all proceeds will go to FOP Australia to support people living with FOP and their fight for a cure.
More information and the secure online order form are available here.

FY23 Annual Report

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.


Oliver Collins Education Grant: Now open for applications

Today we remember Ollie Collins: A vibrant, intelligent and kind-hearted soul who passed away on the 21st April 2021 who is missed tremendously by many, including the Australian, New Zealand and international Fibrodysplasia Ossificans Progressiva community. Ollie was a lawyer, a writer and a strong advocate for people living with a disability.

In honour of Ollie’s memory, FOP Australia are extremely proud to launch the Oliver Collins Education Grant Program today, by opening applications for the inaugural grant round. An email with a link to the online application form has been sent to all people with FOP (and/or their parents/guardians) registered with FOP Australia. Please contact info@fopaustralia.org with queries.


FY22 Annual Report

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.


Support Grant Program: Now open for applications in 2023

The FOP Australia Support Grant Program is now open for applications from people with Fibrodysplasia Ossificans Progressiva (and their direct caregivers). Find out more, including the updated Terms of Reference, at our Support Grant Program page.


Invitation to join the 2023 Coffee Club: Support people with FOP for the cost of a coffee per week

Happy new year! In 2023, we  need your help more than ever to support people with Fibrodysplasia Ossificans Progressiva and their search for a cure.

The FOP Australia Coffee Club is a planned giving program where you commit to give the price of a takeaway coffee ($5)  each week of the year towards research and support activities to improve the lives of people living with Fibrodysplasia Ossificans Progressiva. In just a few clicks you can sign up online here for your donations to be deducted automatically each month in 2023. Receipts will be issued automatically by email after each monthly transactions.

As a thank you for your generosity, after you sign up you will be posted  one of our popular reusable FOP Australia Eco-Cups.

Especially at this difficult time for all charities, this planned giving program plays an important role in helping FOP Australia be sure that we can keep our small charity going. So thank you for considering signing up to the 2023 Coffee Club and sharing this invitation with others.

Please note:
– Secure online payment facility is provided by Stripe. Payment details are secure and are not viewed or stored by FOP Australia.
– Recurring donations of any amount can also be set up any time through our GiveNow facility
Manual  Coffee Club forms are also available upon request through info@fopaustralia.org if preferred.

– FOP Australia Eco-Cups are also available for individual sale online here

Once you enter your payment details at our secure online payment facility, $20 per calendar month will be automatically transferred for each remaining calendar month of this year. Maximum total cost $240. Your payment details will not be viewed or stored by FOP Australia. Your contact details will not be released to any third party.

Join/renew your FOP Australia membership for 2022/23

Have you renewed your FOP Australia membership for 2022/23?
Remember that you have to be a current member to nominate to join the board, or to vote at the Annual General Meeting. Our AGM date will be confirmed soon, so sign up now to make sure you don’t miss out!
General membership is $10 per year for most people. Lifetime membership is free to people with FOP, and clinicians who treat people with FOP or are interested in learning more – contact info@fopaustralia.org to register if this applies to you.
You can sign up with a few clicks here (using our secure payment platform) or email the PDF form on that page (followed by bank transfer).

THANK YOU for your support for the 2020/21 financial year: Fundraising announcement

FOP Australia are very proud to share that during the 2020/21 financial year the FOP community in Australia and New Zealand gave $68,762 to support the global effort to support people with Fibrodysplasia Ossificans Progressiva and their fight for a cure.

Despite the challenges of fundraising during a global pandemic, requiring many planned events to be cancelled or changed, this is an increase over $18,000 more than the previous financial year. This is a great credit to the passion and commitment of our community, who found an amazing variety of ways to show their support.

  • Fundraising activities ranged from selling books, running a half-marathon (solo!), collecting old car batteries for scrap metal, and hosting a footy tipping competition. It was amazing to see many events organised by people who have not held fundraisers before, including new community members.
  • It is also very moving to see a large number of individual direct donations this year. At a time when many people are struggling, this show of support means more than ever.
  • The wide range of non-financial contributions made by volunteers to facilitate activities and keep our small charity running are also vital and sincerely appreciated.

The FOP Australia board is comprised of volunteers who are deeply committed to our shared goals, and to maximising the benefit of all your generous donations and hard fundraising work. In keeping with our prospectively announced KPIs for the 2020/21 year:

  • 50% of funds, totalling $34,381, raised will go to the global research effort. This will be used to invest in a range of research initiatives in order to maximise our impact on progress towards a cure.
    • As part of the contributions to research, $5000 will be given to the Shore Lab at the University of Pennsylvania, to support their ongoing efforts in to understanding this disease. This work on the foundational science of FOP forms the basis for many potential future therapeutic options.
    • Half of the remaining sum, totalling $14,690.50 will go towards the gene therapy campaign. This will be contributed via the IFOPA “In Pursuit of a Cure” program.
    • The remaining sum $14,690.50 will be invested in other drug development initiatives co-ordinated by IFOPA, and the board will work with IFOPA staff to determine where this can have maximal impact. In previous years, this has included support for the ACT for FOP grants which have identified and investigated multiple potential approaches towards effective treatment. This is also contributed via the “In Pursuit of a Cure” campaign, bringing our total campaign contribution to $29,381.
  • Aligning with feedback from our 2019 community survey we continue to build capacity to plan another in-person patient gathering, and as such 25% of funds raised ($17,190) have been put aside for this purpose. Although this may not be able to be facilitated for some time, recognising that this a high priority for the community, and will be one of our largest upcoming investments, we continue to work towards this.
  • The remaining 25% ($17,190) has been allocated to enable support activities. This will continue to include our Support Grant Program and will allow opportunities to explore more ways that we can support and advocate for people with FOP and their families.
  • Because of the generosity and ongoing work by volunteers and supporters, it has not been required to allocate donated funds from this financial year towards administration of the charity. Planning in previous years has enabled sufficient financial reserve to cover our ongoing operational costs, which we continue to minimise as much as possible in order to be sure that every contribution goes to support people with FOP and their fight for a cure.

Thank you for your support during the 2020/2021 financial year. Every contribution to FOP Australia – small and large, financial and non-financial – is very, very appreciated.