This is a good article from the Boston globe and also posted on the Rare Disease Legislative Advocates site. It discusses the collaboration amongst Biopharmas, patients, and other regulatory agencies. It is very encouraging for patients of rare diseases.
http://www.bostonglobe.com/business/2012/06/19/patients-driving-direction-new-drug-research/TjWu74aFVH2g4wNPhUbfQL/story.html?s_campaign=8315
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