Volume 92 Issue 21 | pp. 27-28
Issue Date: May 26, 2014

The Next Wave In Rare Disease Funding

Patient groups are finding new models for funding drug development for their diseases
Department: Business
Keywords: pharmaceuticals, biotech, venture philanthropy, patient advocates, ALS


When Garmt van Soest was diagnosed with amyotrophic lateral sclerosis, or ALS, a rare and fatal neurodegenerative disease, in August 2013, everyone told him, “Well, that’s it. There’s nothing you can do,” he recalls.

But instead of giving up, van Soest, a consultant at Accenture, decided to put his professional skills to work. After meeting two other European executives with ALS through a patient group, he began thinking about finding a cure. He thought, “Why . . .

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