Information for Recent Diagnosis

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 that should help answer many of them.

Remember that you are not alone.

Please take some time to navigate the site for information about FOP and to find support for the days ahead. You may need time to adjust to the new diagnosis, so educate yourself about FOP- slowly.

Here are some suggested links for newly diagnosed families

For additional information, please contact the IFOPA office directly or contact the IFOPA's medical advisor, Frederick S. Kaplan, M.D., or his assistant Kay Rai at the University of Pennsylvania School of Medicine at 215-349-8726 or via email.