FOP Australia are excited to be starting work with CaPPRe (Community and Patient Preference Research) on a project to better understand the needs of people living with Fibrodysplasia Ossificans Progresiva in Australia and New Zealand. We plan that this will help inform our future efforts to advocate for access to services and/or treatments. See more at: https://fopaustralia.org/cappreproject/
We also encourage people living with FOP in Australia and New Zealand to enrol in the international FOP Registry to keep building global understanding of what FOP is, and how to better help people living with it.
It is also exciting to hear about the Genomics of Rare Disease Registry being established by the Garvan Institute of Medical Research, which aims to help the understanding and identification of rare diseases. They are seeking input from people with many rare diseases, including FOP. You can learn more in this information sheet, or at their website.
Learn more about FOP research in the ‘Understanding FOP’ section of this website, and at the International FOP Association website.