Progressive Osseous Heteroplasia Association

08/26/2025

Gives us hope!

🇦🇺✨ A historic moment for the FOP community in Australia! ✨🇦🇺

This weekend, the 2025 FOP Australia Conference opened with a milestone announcement from the Minister for Health, Hon Mark Butler MP:

👉 On September 1, 2025, palovarotene will become the first-ever treatment for FOP available through the PBS (Pharmaceutical Benefits Scheme).

The PBS helps make essential medicines more affordable by subsidizing their cost—ensuring access for those who need it most. For people living with FOP in Australia, this is the first time that treatment will be an option in the PBS. 💚

This milestone was made possible thanks to the leadership of the FOP Australia Board and the courage of individuals and families who shared their stories with government leaders and the Pharmaceutical Benefits Advisory Committee. Their voices highlighted the urgent need for treatment, significantly raised the profile of FOP with the government and healthcare professionals, and helped pave the way for future therapies.

👏 Thank you to the families for your advocacy and to FOP Australia for leading this monumental effort. You're building a future with greater access, awareness, and hope. 🌍💛

03/25/2025

Have you seen our new website? Check it out!
Www.pohassociation.org

03/25/2025

Have you visited the new website yet? It’s www.pohassociation.org

Check it out!

POHA has helped raise over $1 Million for POH Research and have connected families with the leading POH physicians and medical facilities dedicated to POH support.

02/28/2025

Today is Rare Disease Awareness Day and I hope no one is sick of my posts. Just doing my part the best I can for the rare disease Progressive Osseous Heteroplasia. Learn more at www.pohassociation.org
You can learn more, purchase from our store or donate directly to raise funds for a cure. We are all volunteers and no paid staff.

POHA has helped raise over $1 Million for POH Research and have connected families with the leading POH physicians and medical facilities dedicated to POH support.

02/27/2025

Tomorrow is Rare Disease Awareness Day. If you are on this page then you or someone you know if affected by POH. This disease has few answers, a very small community, but a commitment to support each other that’s large in measure! Please find a way to educate others about POH, hold a fundraiser or make a donation in honor of your patient. Together, we can make a difference!

02/18/2025

We are officially 10 days from Rare Disease Day! I plan on wearing my POHA apparel, spreading awareness and making a donation to support our cause. What are you going to do?

12/03/2024

Want to help raise awareness? Want to raise funds for research? Want to show your POH loved one you support them? Go to the merch store and make a purchase!

11/27/2024

MERCH STORE OPEN NOW! Please take a look at our store with new items added for this year. This is the kick off event for Rare Disease Day on February 28, 2025. Get your merch early and maybe use as a holiday gift. Help raise awareness and funds for a cure!

Check out POHA MERCH STORE on Bonfire and shop official merchandise today! Featuring limited edition custom apparel, printed with care in the USA just for you.

11/22/2024

PeerView - Check out this new fibrodysplasia ossificans progressiva educational series from and earn CME credit!