FOP Australia was established in 2015 to improve the lives of individuals and families affected by FOP in Australia and New Zealand by:
- Raising awareness of FOP
- Providing a support network for families and individuals with FOP
- Furthering research towards treatment and a cure
Further information about our activities can be found in our annual reports, which include a review of our activities against the organisational goals each year, on our Annual Reports page.
With the FOP research effort entering the clinical trial phase, in late 2018 the board mapped out an Advocacy Strategy for the charity to guide future strategic planning. You can read more about the development of the strategy here.
We work with others in the international FOP community to achieve our shared goals. We work closely with the International FOP Association (IFOPA), and are so grateful for the support of global FOP champions such as these:
- “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.” Professor 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.
