Helpful Links

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

Organizations around the world








The Netherlands


  • Asociacion Maria Claudia FOP
    Website under construction | 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, based in Brazil, is an e-mail discussion group for FOP members who speak Portuguese. For more information or to join, click here.

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.

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

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.