About Us

FOP Australia was established in 2015, with the first Annual General Meeting held in Brisbane in May that year. Through links with the International FOP Association, we aim to improve the lives of individuals and families affected by FOP by:

  • Raising awareness of FOP
  • Providing a support network for families and individuals with FOP
  • Furthering research towards treatment and a cure


Our current key performance indicators for the 2017/18 financial year, is available here. The review of our activity to fulfil our 2016/17 KPIs is available here.


“With FOP Australia, we have a vital new patient support and advocacy group and an exciting new link to a brighter future for all individuals with FOP.” Frederick Kaplan, M.D. Director, Center for Research in FOP and Related Disorders. The University of Pennsylvania, Philadelphia.

“Congratulations FOP Australia – your hard work and extraordinary efforts add strength to our global effort in finding a treatment and a cure for FOP.” Jeannie L. Peeper. Founder, International FOP Association.

“A well organised and connected international FOP community is a major contribution we can bring to achieve our major wish of a treatment” Moira Liljesthrom. IPC rep for Argentina. Previous IPC Chairperson and IFOPA board member.