Mapping valuable insights from the FOP patient community in the UK and Spain

FOP is an ultra-rare genetic disorder where extra bone formation takes place in soft tissues, including muscles, tendons and ligaments, causing irreversible and progressive loss of mobility and leading to severe disability. To better understand the struggles that people living with this life-changing disease and their caregivers face, we worked with the patient community in the UK and Spain to gather important insights into their experiences.

In the UK, we collaborated with FOP Friends to conduct in-depth interviews with people living with FOP and their caregivers about how the disease impacts them. These critical insights were used to create an interweaving patient experience map to raise awareness of the unmet needs of people living with FOP. A key finding from the research was the importance of raising awareness of the condition in the right way and striving for balanced media coverage that accurately represents the FOP patient experience.

Similarly in Spain, we collaborated with Asociación Española de Fibrodisplasia Osificante Progresiva (AEFOP) to map the experiences of people living with FOP. In total, 74 key insights were identified at different phases of the disease, leading to 12 actionable ideas to support future activities. These actionable ideas included disease awareness, early diagnosis and identifying people living with the condition, healthcare professional and patient education, as well as networking and referral. 

These important insights and perspectives from the FOP patient community are vital to ensure we are focusing our efforts where we can make the strongest impact for patients.