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In a move fraught with bitter overtones, the parents of twin girls who have a rare and fatal genetic disorder filed a lawsuit claiming a rare-disease drug accelerator and a drug maker misappropriated confidential business plans and medical research that was shared as part of a deal to find a treatment for the affliction.

The lawsuit was filed by Christine and Hugh Hempel, whose persistence in trying to find a salve for Niemann-Pick disease Type C is an example of the Byzantine challenges facing families that encounter rare diseases. Now, though, their efforts, which have been extensively chronicled, have detoured to a federal court because they claim precious data was misappropriated by companies that breached an agreement to work together to fight the disease.

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After their daughters were diagnosed, the Hempels worked feverishly pursuing a cure and identified a compound called cyclodextrin that suggested it might be developed into a useful treatment. They then contacted a slew of academic, government, and industry researchers and, starting a decade ago,  invested more than $3 million into research efforts and collected still more funds in donations.

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