Few and Far Between Open Access
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This thesis concerns a family and their five-year-old daughter who lives with Sjögren-Larsson Syndrome, a rare genetic condition that effects approximately 100 people in the United States. Through photographs, video, and text, the work documents this family in Fairfax, Virginia from June 2012 to March 2013 as they navigate daily life, treatment, and awareness of their daughter's disease. Sjögren-Larsson Syndrome is just one of 6,000 rare diseases recognized by the NIH-- 97% of which have no cure despite the passing of the Orphan Drug Act in 1983. Based on research that included medical journals, NIH data, and interviews with researchers and patient group advocates, the resulting work is compiled in an eBook. This body of work makes clear that those living with a rare disease must band together to benefit from the share of information, support, and knowledge gained through organization.