Helpful Links

Organizations around the world | Websites about FOP
E-mail-based support groups | Family and personal websites

Organizations around the world

Argentina

• Fundación FOP
  E-mail

Brasil/Brazil

• FOP Brasil
  E-mail

Canada

• Canadian FOP Families and Friends Network
  E-mail

England

• FOP Action
  E-Mail

Germany

• FOP-e.V.
  E-mail

Italy

• FOP Italia
  E-mail

Japan

• J-FOP
  E-mail

The Netherlands

• FOP Stichting Nederland
  E-mail

Peru

• Asociacion Maria Claudia FOP
  Website under construction | E-mail

Sweden

• Svenska/Skandinaviska FOP-föreningen
  E-mail

Spain

• AEFOP-Asociación Española de Fibrodisplasia Osificante Progresiva
  E-mail

Websites about FOP

The following websites were set up by individuals and families to help spread information about FOP:

Colombia
E-mail

India
E-mail

Japan (FOP Step Jump Website)
E-mail

Poland
E-mail

E-mail-based support groups

In addition to the IFOPA’s FOPonline email newsgroup group, families may wish to turn to these resources.

FOPbrasil
FOPbrasil, based in Brazil, is an e-mail discussion group for FOP members who speak Portuguese. For more information or to join, click here.

FOPlatinoamerica
FOPlatinoamerica, based in Argentina, is an e-mail discussion group for FOP members who speak Spanish. For more information or to join, click here.

Pray for FOP Healing
Pray for FOP Healing is an online group that gives IFOPA members an opportunity to share prayer requests, inspirational quotes and poems and talk about how faith sustains them. For more information or to join, contact Theresa Caruso. While this group is part of IFOPA services, The International FOP Association (IFOPA) is a non-denominational/non-religious organization, and, as such, it does not endorse, serve, or favor any specific religious organization, practice, sect, or idea of any kind.

Family and personal websites:

Weldon FOP Research Fund
The Weldon Family has established the Weldon FOP Research Fund at the University of Pennsylvania in honor of their daughter, Whitney. Learn about this New Jersey's family efforts in funding research in the genetic area of FOP, fundraising events, and political updates by visiting their website.

Hayden's Hope
Hayden's Hope was developed in honor of Hayden Pheif, a young boy with FOP. Donations to the IFOPA can be made through Hayden's website. The website has information about Hayden and the IFOPA. The Annual Hayden's Hope Fundraiser is held every year in the fall.

Friends with FOP
A blog created by IFOPA member Suzanne McCloskey following the lives of Erin, Kate and Miranda, three children with FOP.

Tomasz Przybysz's FOP website
Tomasz Przybysz created an FOP website in Polish.

Ivan Garcia's FOP website
Ivan Garcia created a website about FOP in Spanish.

Touch Medusa
Akihiro Shino created a website in Japanese called "Touch Medusa!" which contains a diary and shows his life with FOP with lots of pictures in his website.