Learning to Thrive

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Collaboration is critical to addressing problems faced by the rare disease community, but too often collaborations between advocacy organizations turn sour because of miscommunication, a lack of trust between partners, or when unnecessary competition trumps cooperation. A group of rare disease advocacy organizations, including Global Genes, earlier this year launched the THRIVE initiative (https://www.thriveforrare.org/), an effort to foster cooperation between rare disease groups and address the behaviors that too often undermine the work of the community. We spoke to Amy Brin Miller, executive director of the Child Neurology Foundation and co-founder of THRIVE, about the initiative, how it came about, and the problem it’s trying to address.

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