Patients and Families

If you or a family member has just received a diagnosis of fibrodysplasia ossificans progressiva (FOP), you will have plenty of questions. The IFOPA provides information on this site to help answer many of them. 

First, please fill out the FOP Patient Directory form. This allows us to have your current contact information so that we can send you updates about research, clinical trials and other communication. Signing up will also include you in an online, searchable patient directory so that you will be able to connect with others in the FOP community all around the world. Remember that you are not alone.  

Please take some time to navigate the site to learn about FOP and to find support for the days ahead. You may need time to adjust to the new diagnosis, so go at your own pace to educate yourself about FOP.  

Here is a suggested course to help guide you through the beginning of your journey with an FOP diagnosis. 

1

Say "Hello" and Get a Welcome Packet

If we haven't already met please reach out to IFOPA Family Services Manager Hope Newport or call her at +1 785 294 1607 to let her know that you are newly diagnosed to learn more about the amazing programs at the IFOPA. Request a Welcome Packet to receive a folder with printed materials to have on hand as well.

2

Learn About FOP

3

Join the FOP Patient Directory

The online FOP Patient Directory is available at fopdirectory.org. This helpful resource contains profiles for individuals with FOP, complete with photos and contact information, so you can get in touch with others in the community. The FOP Patient Directory is especially helpful for connecting with people who live near you or people of a similar age.  

4

Plug into the FOP Patient Community

5

Learn How to Manage your Care

Due to the rarity of FOP, many medical personnel are not familiar with nor know how to treat someone with the condition. The IFOPA has provided access to helpful information to help empower individuals in their role as advocates for their medical needs.

We also highly recommend exploring the "Caring for Yourself and Your Children" guide created by Global Genes for support in managing areas of care not specific to the healthcare setting.

6

Get Involved in Research

Register for the FOP Registry
A global, voluntary database that collects demographic and disease information directly from individuals with FOP through a secure website. It is one of the greatest, most significant ways every patient can contribute to FOP research.  

Contribute to the FOP Biobank
Donate blood, urine, saliva or "baby teeth" biosamples to help researchers make new discoveries in FOP, test new drugs, and look for new markers of the disease.

Educate yourself
Learn more about ongoing clinical studies and trials.