02340nam a22004811i 4500 000709116 CaToSAGE 20240202172917.0 20211207112242.7 m o d cr un||||||||| 211207s2021 enk fo 000 0 eng d NEZPRACOVANÝ IMPORT 9781529796988 (ebook) : No price (OCoLC)1289632304 CaToSAGE eng rda pn CaToSAGE UtOrBLW n us HD2769.15 .E45 2021 658.048 Elias, Jaan, author. A rare disease patient registry / Jaan Elias, Gwen Kinkead, Greg Licholai. London : Yale School of Management, 2021. 1 online resource. text txt rdacontent computer c rdamedia online resource cr rdacarrier SAGE Business cases Originally Published InElias, J., Kinkead, G., & Licholai, G. (2021). A Rare Disease Patient Registry. 20-035. New Haven, CT: Yale School of Management, Yale University. 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. Description based on XML content. elektronické knihy fd186907 czenas electronic books eczenas Nonprofit organizations Case studies. Health facilities, Proprietary Case studies. Kinkead, Gwen, 1951- author. Licholai, Greg, author. SAGE Business cases. SAGE Knowledge https://sk.sagepub.com/cases/a-rare-disease-patient-registry Plný text SBC EB NEPOSILAT EB