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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.


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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