FOP National Organizations

The work of the IFOPA is supported and complemented by national organizations across the globe. Organizations are listed below, along with website, social media pages and email contact, if available. While these organizations are not formally affiliated with IFOPA, we are deeply grateful for the work they do outside of the USA to serve the FOP community and connect individuals and families with resources and other FOP patients on a regional and national level. Questions? Please contact the IFOPA at together@ifopa.org.

Argentina

Fundación FOP

http://fundacionfop.org.ar/

Contact:
Moira Liljesthröm
moiralil@gmail.com

 

Australia

FOP Australia

http://fopaustralia.org/

Facebook: https://www.facebook.com/FOPAustralia

September 2017 Newsletter

Contact: 
Brooke Scott
brooke_scott@y7mail.com


Brazil

FOP Brasil

http://www.fopbrasil.org.br

Facebook: https://www.facebook.com/fopbrasil.org

Contact: 
Patricia Delai, MD
patricia.delai@gmail.com

 

Canada

Canadian FOP Network (CFOPN)

http://www.cfopn.org/

Contact: 
Carrie Connell
canadianfopnetwork@live.com

 

China

Contact: 
Keqin Zhang, MD, PhD
13621798084@126.com

 

France

FOP France

http://www.fopfrance.fr/

Facebook: https://www.facebook.com/FOPFrance

Contacts: 
Antoine Lagoutte
antoine.lagoutte@fopfrance.fr

Marie-Emmeline Lagoutte

 

Germany

FOP ev

www.fop-ev.de

Contact: 
Ralf Fischer
ralf.fischer@fop-eV.de 

 

India

FOP India

www.fopindia.org

Contact:
Sunil Kumar
sunil@fopindia.org

 

Italy

FOP Italia Onlus

http://www.fopitalia.it

Facebook: https://www.facebook.com/groups/174550839728

Contacts: 
Massimo Alfieri and Enrico Cristoforetti
info@fopitalia.it

 

Malaysia

Contact: 
Juliana Louise
jjlyanaa@gmail.com

 

Netherlands

FOP Stichting Nederland

http://www.fopstichting.nl

Facebook: https://www.facebook.com/FopStichtingNederland

Contact: 
Elinor Bouvy-Berends, C.M. DDS
info@fopstichting.nl

 

Poland

www.fop.bo.pl

Contact: 
Robert Pióro
piororobert@gmail.com

 

Russia

Contacts: 
Anna Belyaeva
belyaevaa@yandex.ru

Mihail Belyaev
mihail.belyaev@gmail.com

 

Serbia

Contact: 
Jelena Milosevic
jelenamilosevic223@gmail.com

 

South Africa

South African F.O.P. Association (SAFOPA)

Contact: 
Chris Scott, MBChB, FCPaed
christiaanscott@gmail.com

 

Spain

AEFOP-Asociación Española de Fibrodisplasia Osificante Progresiva

http://www.aefop-es.org

Contact: 
José Luis Plaza
aefop-es@hotmail.com 

 

Sweden

Svenska/Skandinaviska FOP-föreningen

http://www.fopsverige.se/om/fop-forening/

Contact: 
Annalena Josefsson
info.fopforeningen@gmail.com

 

United Kingdom

FOP Friends® (FOP Action)

http://www.fopfriends.com

Facebook: https://www.facebook.com/fopfriends

July 2017 Newsletter

Contact: 
Chris Bedford-Gay
chris@fopfriends.com

United States

Contact: 
Marilyn Hair
marhair1@frontier.com

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