Book Excerpt from The Power of Rare

In chapter 4, “Building a Cure Machine,” author Victoria Jackson reveals the challenges in launching a foundation focused on funding research on a rare disease.

Written byMichael Yeaman and Victoria Jackson
| 3 min read

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Regan Arts, September 2017Curing a disease is not for wimps.

Even before the ink was dry on our foundation charter, that was something I knew instinctively. And it has served as a mantra ever since—a reminder that has kept me on my feet, especially on those fearful days when all I’ve wanted to do was curl up in a fetal position in the corner. Now that we’d gotten everyone into the room and had created incentives for sharing, the greater challenge was figuring out how to translate all that brilliance and life-saving science and patient insight into the moving parts of a real-world, practical delivery mechanism for change.

Such was the vision for our cure machine.

Questions and challenges abounded. Not just what had to be done—but how. How did we connect and synchronize our ...

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