International Fibrodysplasia Ossificans Progressiva Association (IFOPA)
PO Box 196217
Winter Springs, FL 32719-6217
This is a non profit organization which supports education, communication, and medical research.From its small beginning, the IFOPA has flourished into a network that now reaches 175 families in 20 countries. And thanks to the support of the IFOPA, medical research at a top university offers hope for a brighter future for people with FOP.
To help educate families, physicians, and other interested individuals, the IFOPA does the following: operates a resource center which serves as a central clearinghouse for information on FOP; publishes What is FOP? A Guidebook for Families and What is FOP? Questions and Answers for the Children, the first comprehensive resource package written specifically for families dealing with FOP; maintains a site on the World Wide Web so that information is easily accessible to the public; and prints The FOP Connection and Milestones newsletters for members and contributors in order to foster better communication about FOP.