Guidebooks and Resources

For new FOP families, the best place to start is:

What is FOP? A Guidebook for Families First published in 1995 this book provides comprehensive answers for families and medical professionals, information on research and treatment options as well as articles by parents of children and adults with FOP offering valuable insights into the condition.

What is FOP? Questions and Answers for Children is another guidebook written for children aged between 8-12. FOP is explained in simplistic terms and is recommended for younger children with adult supervision.

IFOPA has collated a large database of information on accessing adaptive technologies, gadgets, mobility and self help aids. This list is being constantly revised.

IFOPA has created the FOP Emergency Card as a quick source of vital FOP information. IFOPA members keep the FOP Emergency Cards in their wallets, cars and with babysitters and caregivers of people with FOP. All new IFOPA members receive an FOP Emergency Card in their new member packets. Please contact the IFOPA office for additional cards.