Osteogenesis imperfecta (OI) is a rare genetic disorder associated with low bone density and increased bone fragility. OI can lead to a variety of supportive and medical care needs; yet financial impacts for families and individuals living with OI remain understudied and largely invisible. Efforts by families to recover costs through GoFundMe®, the most important crowdfunding web platform worldwide, offer an unprecedented opportunity to gain insight into OI costs. The purpose of this study was to describe GoFundMe® profiles and determine what factors may contribute to funding goal achievement. A netnographic approach was used to investigate a publicly available dataset from GoFundMe®, with 1206 webpages extracted and 401 included for analysis. Most webpages originated from the United States and were created by family members. Nineteen cost categories were identified. Thirty-seven web profiles met their funding goal. Funding increases or goal achievements created for children were associated with increased social-media exposure (i.e., Facebook). This study helped to describe and showcase the financial impacts of OI and effectiveness of a crowdfunding website to alleviate costs. The results highlight the need for further research to better understand OI costs and provide economic supports for individuals with OI.
Keywords: costs; costs of illness; healthcare costs; netnography; osteogenesis imperfecta.