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A Rare Disease Patient Registry

A Rare Disease Patient Registry

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Yale School of Management
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Michael Hund, CEO of Epidermolysis Bullosa Research Partnership (EBRP), had arrived at a fork in the road. He faced a decision on the structure of an entity he had created with help from a cloud computing industry leader for a database of health information about Americans struggling with epidermolysis bullosa (EB). Should he spin out the new entity from EBRP into a for-profit venture? He had offers from venture capitalists and investors to capitalize a for-profit company. Or should he stay with the tried-and-true model for medical charities and establish a non-profit to hold the database? Both options offered opportunities and challenges.

Hund was inclined to an entrepreneurial path. He was an MBA from Yale’s School of Management; his family tree included entrepreneurs; and he had founded a real estate holding company. At EBRP, the charity had used an innovative venture philanthropy business model to invest in companies developing EB treatments that would also earn the charity profits. In his three years at EBRP, Hund's leadership brought in $22 million in donations and over a dozen venture philanthropy agreements with industry for drug discovery. Several candidates were now in human trials. If they worked, they’d be the first prescription treatments for a devastating disease. In addition, EBRP occasionally had taken equity in its biopharma partners and had also incubated several start-ups. Given his entrepreneurial instincts and training, how should he organize the venture for a new, cloud-based platform for EB patients? How would the structure he chose for his company affect its success?

Publication: February 28, 2021

Citation: Gwen Kinkead, Gregory P. Licholai, and Jaan Elias, " A Rare Disease Patient Registry: Determining a Structure that Inspires Trust," Yale SOM Case 20-035, February 28, 2021.