- IFOPA - International Fibrodysplasia Ossificans Progressiva Association - Support group for families. Information about the condition, treatment, and research efforts.
- McKay Orthopaedic Research Laboratory - Summaries of current research projects at the University of Pennsylvania.
Media publications
- SFGate - San Francisco Chronicle article describes the disease, includes anecdotes about the lives of several patients. (Published 2005.05.31)