source: Presented at the NORD Rare Disease and Orphan Products Breakthrough Summit

year: 2017

authors: Dan Donovan, Laura Wuerth, Dakota Fisher-Vance, T. Anthony Howell

• The growth of online communities in particular is revolutionizing the way that PAC live with their disease, receive trusted information, and meaningfully share their experiences.

• The advantages of an online rare disease community can extend well beyond serving as a web-based discussion forum and a source for relevant, trustworthy, up-to-date information. A successful online rare disease community can also inform and propagate medical research, consequently facilitating the ultimate goal to find cures and therapies and otherwise improve the experience of living with the disease.

• Familial Adenomatous Polyposis (FAP) is a rare, hereditary cancer syndrome most notably characterized by the development of hundreds to thousands of colon polyps that, if left untreated, will lead to cancer in nearly 100% of the cases at an average age of 39. Initially, most of the FAP community’s digital presence was limited; the landscape was composed predominantly of facebook groups having varied levels of activity and quality and a single not-for-profit organization encompassing all hereditary colorectal cancers. The FAP PAC community did not have their own centralized online home dedicated to their particular disease where they could connect with each other and find quality resources.