Our Mission

Fund research to find a cure for FOP while supporting individuals and their families through education, public awareness and advocacy 


Our Vision

A Cure for FOP


IFOPA Website Policies, Procedures and Legal Issues

Website Policy

It is the policy of the International FOP Association (IFOPA) to maintain a website that supports the mission of the IFOPA, facilitates the exchange of information, experiences and opinions among its members, and educates the medical and general communities about FOP. The goal is to improve the world's awareness of FOP and reduce the number of misdiagnoses.

The website also allows IFOPA members to readily access organizational announcements, updates, fundraising, news, research and more. The IFOPA pledges to respect the privacy of all visitors to this website and to adhere to the good practices published by Health On the Net (HON). Please Contact Us with suggestions you have for improving this website.

Limit to Website Content & Disclaimer

The IFOPA will perform the basic research necessary to reasonably ensure the content of its website is accurate, up-to-date, and fairly stated. However, the content of this communication tool is provided for informational purposes only. The IFOPA does not warrant any information found therein, and it cannot be held liable for any action taken because of the information contained therein.

Furthermore, the officers, staff and volunteers of the IFOPA are not medical professionals. While we make every effort to assure accuracy, information within these pages is provided with the understanding that it does not replace professional medical advice. All medical information presented should be discussed with a qualified physician.

General IFOPA Privacy Policy

The IFOPA is committed to protecting the privacy of its members, readership and other associated parties. We will not, without permission, disclose, share or sell any personal information provided to us by any means of communication (e.g. website, online group, publications, membership application) with any other party, organization or entity, except as required by law.

Website Privacy

The IFOPA pledges to take all reasonably necessary steps to protect the personal information of both visitors and those whose information is contained on the site. The IFOPA reserves the right to change this privacy policy at any time. The visitor's continued use of the website will be considered agreement to the changed terms. Anyone wishing more information on the Privacy Policy, or to have his/her name etc. removed from the website, should contact the IFOPA

FOPonline Privacy Policy

FOPonline is a special service for IFOPA members that is intended to encourage better communication about FOP. Subscribing to the group for the purpose of compiling a mailing list or furthering commercial or personal interests is prohibited.

The IFOPA protects the anonymity of the members of FOPonline by setting up the bulletin board discussion group so that the email addresses of members are not available to participants of the group. If a person does not post messages, only the moderators will have access to that person's name and email address. Whenever a message is posted, however, other participants will see the sender's name and email address.

Copyright Policy

The IFOPA website includes a variety of materials created by the organization, its staff, its members and other affiliated parties. Although these works may be freely accessible on the World Wide Web and though they may not include any statement of permissions, the U.S. Copyright Act nevertheless protects them as property of the IFOPA. All rights are reserved. Anyone wishing to reproduce these items, in whole or in part, must first obtain written permission from the IFOPA.

Links to This Site

The IFOPA is aware of its connection to other support groups and to those devoted to rare genetic bone related conditions. As a small organization with limited resources, however, we must be thoughtful and selective about where we are linked. Therefore, we will evaluate each request individually. When a link is allowed, we have a specific statement we want copied and used. Please note that the IFOPA is not responsible for the content of sites that link to us, and we cannot be held liable for anything stated therein or of the privacy policies contained thereon. Anyone wishing to link to our site must first obtain written permission from the IFOPA.

To contact the IFOPA, please click here.

Links to Other Sites

Our website contains links to other sites as a service to our visitors and do not constitute an endorsement of those sites by the IFOPA. The IFOPA is not responsible for the content of sites that we link to since they may change at any time without notifying us, and we cannot be held liable for anything stated therein or of the privacy policies contained thereon. We encourage you to review the privacy policies of these destinations prior to your visit to them.

Please note that in some cases, such as links to Amazon.com, an identifyer is added to the link in order to assure that any subsequent purchases are credited to the IFOPA, but we keep no personal identifying data. Products or services mentioned are provided for the convenience of our visitors, and the IFOPA does not endorse specific products or services.


Cookies are pieces of information that are stored on your computer and are used for record keeping purposes. The IFOPA's electronic newsletter system uses “session” cookies to help users access subscription material. Session cookies are temporary and will expire when a browser session is closed.


This site is currently not funded by a donor, and the IFOPA remains open to sponsorships of this site. While we do not currently host advertising, we remain open to this possibility in order to reduce the costs of maintaining this site. We seek relationships with organizations such as Amazon.com where we receive a small commission. When advertising/sponsors are added, they will be clearly identified and separated from the editorial content, which will not be influenced by advertisers in any way. We will take great care that advertising is compatible with the reputation this organization has earned over the years.