Resources- Specific Diagnosis Card Catalog- Fibrodysplasis Ossificans Progressiva (FOP)

Who to Contact

International Fibrodysplasia Ossificans Progressiva Association (IFOPA)
PO Box 196217
Winter Springs, FL 32719-6217
(407) 365-4194
E-mail: together@ifopa.org
Web: http://www.ifopa.org/

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.

Where to go to Chat with Others?

Foponline
A private, online group where people with FOP can discuss their concerns and share their stories. Contact IFOPA for further information.

Learn More About It

FOP Frequently Asked Questions

Fibrodysplasia Ossificans Progressiva
from OMIM

Links

International Fibrodysplasia Ossificans Progressiva Association (IFOPA)