When someone is diagnosed with FOP it is a very daunting experience. Given the rarity of the disease, it is difficult to know where to turn or what to do next.
That is where FOP Australia can help, knowing that there are others who can be contacted to provide support here in Australia.
Our members are spread across most Australian states and territories, as well as New Zealand, and whilst we may be small in number, our support base is large and growing all the time. Everyone is welcome to Join FOP Australia– people with FOP, family members, friends, health professionals, and anyone interested in learning more and supporting our work.
FOP Australia also link health professionals treating FOP together, sharing twice yearly newsletters on research and clinical updates, and providing a network to help link clinicians to international experts. Any health professional interested in learning about FOP is offered free FOP Australia membership.
The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) website is an invaluable place to start gleaning extensive information on aspects, issues and considerations in regards to FOP. By joining IFOPA you can receive current information and updates on the latest FOP news (fees waived for people with FOP).
It is important to learn as much about FOP as possible. Accessing information is critical for FOP patients and their families. By becoming a member of both FOP Australia and the international association (IFOPA), you will receive current information and updates on the very latest FOP news.
Websites from other countries are listed below, including those with information in languages other than English:
- Argentina
- Canada (Canadian FOP Network)
- United Kingdom (FOP Friends)
- Germany
- Italy
- Netherlands
- Sweden
The IFOPA web page also has links to a number of personal blogs in different languages including Polish, Spanish, Japanese and English.
Other blogs that might prove useful include: