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.

Updated clinical trial resources

Published: November 23, 2023 ~ 0

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!

Published: November 9, 2023 ~ 0

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.

Oliver Collins Education Grant: Now open for applications

Published: April 21, 2023 ~ 0

Today we remember Ollie Collins: A vibrant, intelligent and kind-hearted soul who passed away on the 21^st 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.

Support Grant Program: Now open for applications in 2023

Published: January 1, 2023 ~ 0

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.

Join/renew your FOP Australia membership for 2022/23

Published: October 9, 2022 ~ 0

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).

Updated FOP Treatment Guidelines from the International Clinical Council

Published: April 16, 2021 ~ 0

The International Clinical Council for FOP have provided a update to the FOP Treatment Guidelines.

The Treatment Guidelines cover many topics; a good place to start is the Executive Summary of Key Practice Points (Section II). We also suggest you review the Table of Contents where you can click any topic to be taken to that section.

There are 4 new topics this year in Section V – Special Medical Considerations in FOP:

COVID-19
Dermatology & FOP
Nutrition, calcium, and vitamin D guidelines
Aids, assistive devices and adaptations.

A general recommendation on page 5 of the Guidelines is that “Each patient should have a primary physician who is willing to consult with an FOP expert and help coordinate a local care team.” We highly suggest that you share the 2021 Guidelines with your local primary physician and care team.”

We are grateful to Drs. Kaplan and Pignolo, Corresponding Editors of the FOP Treatment Guidelines, and the other physicians and dentists from around the world who spent many hours reviewing published literature, discussing clinical practice and writing the 2021 Guidelines.

There is a link to the Updated Guidelines April 2021 at the top of every page on this website.