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 Paper Application Undiagnosed Diseases Network 2017

2017-2025 Form

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[Music] my name is Amy gray I'm the chief executive officer of the undiagnosed diseases Network Foundation the undiagnosed disease Network Foundation is a new nonprofit organization we launched the foundation last year on February 28th 2023 rare disease day and really there were two drivers for launching the foundation one was to ensure the sustainability and the growth of the undiagnosed diseases Network which is an NIH funded research study and the funding was sunsetting for that um so stakeholders came together out of concern that this incredible program that's been funded for over 13 years by the NIH may go away um and believe that a new business model would be um very helpful for sustaining and then eventually growing Network itself so the decision was made to launch a patient organization that was led by and four patients um but when the stakeholders came together in addition to this you know huge um issue of funding sunsetting they also recognized there were a lo

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