Tell the FDA What It's Like to Live With FOP

There's Still Time to Submit Your Letter Before the Advisory Committee Meeting

As you know, the FDA Advisory Committee Meeting on palovarotene capsules was postponedWhile disappointing, it gives us more time and opportunity to tell the FDA what it's like to live with FOP. The FDA is asking, so let's tell them.

We're grateful to the 26 people from around the world who wrote letters. It's a start, but we need MANY MORE to make an impact! Letters only need to be one page and you can include photos. Learn more below about what to include in your letter and then submit your letter and photos at


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