Use of Netnography to Understand GoFundMe Crowdfunding Profiles Posted for Individuals and Families of Children with Osteogenesis Imperfecta.

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.