FOP Australia are excited to work with Community and Patient Preference Research (CaPPRe) on a project to better understand the needs of people living with Fibrodysplasia Ossificans Progressiva in Australia and New Zealand.
As a small volunteer-run charity working to help people with ultra-rare disease, FOP Australia aims to effectively advocate for things like access to treatment and services. We have learnt a lot about this in recent years, as potential treatments for Fibrodysplasia Ossificans Progressiva start to emerge in research and undergo regulatory review.
As part of building on lessons learnt from the first Pharmaceutical Benefits Advisory Committee (PBAC) review of potential FOP therapy in November 2024, FOP Australia have decided to obtain professional support in collating information about the needs of people living with FOP. We believe this will help us present this information to decision-makers in the most informative and effective way possible. Engaging with professional researchers also helps us ensure that we adhere to best practice for processes like consent and handling of confidential information.
Email invitations are beinng sent out via FOP Australia (example in image below). If you are interested in finding out more about this study, and considering participating, let us know at info@fopaustralia.org and we will put you in touch with the research team.
