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The Power of Rare


What does it mean to have a rare disease? To be alone? To be lost? Or is there an infinite power in rare? A decade ago, little was known about neuromyelitis optica. When Victoria and Bill learned their daughter had NMO, they were in the dark. They were determined to help her and rare patients like her. They United a community of problem solvers from around the world who would never have come together otherwise.


This one of a kind team of researchers, drug companies and families joined forces creating a revolutionary model for how information can be shared and answers can be found. This international well Alliance rewrote the book on NMO, helping hundreds of thousands receive the most accurate diagnosis and customized care. More and more test tube discoveries are being turned into life saving medicines. And secrets of the immune system discovered through NMO are shining new light to solve other diseases rare and not so rare. What began with one woman’s love for her daughter has become uncle global mission for cures. The Power of Rare can help solve the unsolvable, cure the incurable from rare patients to rare partnerships. The foundation has sparked a bold new movement for health. The strength of one raised to the benefit of all, that is the Power of Rare.


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