Quick Links

Below is a listing of our most popular content, which we have assembled on this page to make it easier to find for our users.

Clementia Phase 2 Trial
This page contains clinical trial contact information, informational video, government website links, Phase 2 FAQs (frequently asked questions), and Phase 2 clinical trial announcement.

Annual Reports
The Annual Reports of the FOP Collaborative Research Project offers a comprehensive look at how the FOP research effort has evolved over the course of a year. They include reports of specific experiments conducted, as well as overviews of future experiements and overall dealings in the Lab itself.

The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Considerations
This document contains detailed medical information and guidelines on the symptomatic management of FOP. The proper care and management of FOP requires the ongoing involvement and consultation of a physician. No patient should be self-medicated without the advice and guidance of a physician.

Support Guidebooks
Living with FOP is not easy. Neither is dealing with the overwhelming emotions that come with being diagnosed with FOP. For FOP families, the best place to begin is What is FOP? A guidebook for Families, which provides a comprehensive look at FOP, answering many questions commonly asked of families and medical professionals.What is FOP? Questions and Answers for the Children is a separate guidebook written for an audience of children ages 8-12, explaining FOP in easy-to-follow language.

IFOPA/FOP Facts in Brief
These two reference PDFs offer at-a-glance statistics for both FOP and the IFOPA, making them great tools for FOP- and IFOPA-based education and advocacy.

Please consider getting involved with fundraising! It can be tons of fun, and the best way to insure a bright future for the one in your life with FOP. Take a look at the variety of fundraising possibilities listed below and, perhaps, you will find one that fits with your friends and family. When making your choice, please don't think only of how much you can make, but also about how much time you have, volunteers to help, potential publicity, etc. Remember: Every fundraiser is important, big, small & in-between.

While you may think that you are just one person, and your voice is too small to be heard, every effort makes a difference! In fact, it is essential that you write to your elected officials. That's how grass-roots lobbying has its largest impact. The greater number of people who write and call their representatives, the more influence we have in order to make a difference in the lives of those with FOP.