Our Friends Around the World

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We are proud to work alongside the amazing international FOP patient organisations that exist around the world which all have one common goal: to find a cure for FOP.  Despite being an ultra-rare disease, we are fortunate to have so many excellent medical professionals, researchers, volunteers, and groups working tirelessly to support everyone affected by FOP and to find that treatment for everyone so cruelly affected.

Chris has served on the board of the IFOPA since 2011 and is also the Chair of the International President’s Committee IPC.  Helen is a member of the FOP Registry Patient Advisory Board, and the Family Services Committee.  Chris frequently travels to meetings and gatherings around the world.  He collaborates with other organisations, learns about the latest developments in the research world, and also shares the good practice of FOP Friends.

Click the logos to visit the other organisations’ websites: