Why Rare Disease Patients Should Work Together to Address Common Concerns

The large number of rare diseases and the small number of patients afflicted with any one of them can help fuel a sense of isolation these patients feel. Sandra Shpilberg, CEO of Seeker Health, has interviewed many rare disease patients over time as part of her work to help drugmakers find participants for clinical trials. In a recent article on her website she argues that rare disease patients, regardless of their particular ailment, share much in common. We spoke to Shpilberg about the disease burden that rare disease patients face, how they may seek to address some of these issues, and why collaboration throughout the rare disease community is critical to creating better outcomes.