Strength in Numbers
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Imagine a world where your child has a rare disease that\\u2019s so rare, it doesn\\u2019t have a name and only a handful of people around the world have a similar condition. It can leave you feeling helpless and alone knowing the odds are stacked against you.\\xa0
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This is the situation Bo Bigelow experienced with his daughter, Tess. She suffers from a USP7, a neurodevelopmental disorder that impacts her motor function, speech, and bone development. Tess\\u2019 condition left Bo looking for help\\u2026 and he found a lot of other patients and families with other ultra-rare diseases that wanted to share their stories too. Today, Bo\\u2019s initiatives have given hope to other people and help them find strength in knowing they\\u2019re not alone.\\xa0
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Join us as we discuss the ways Bo documented his daughter\\u2019s journey, learn more about USP7-related diseases and their impact, how Bo created the Disorder Channel as a way for other rare disease patients to tell their stories, what progress is being made to learn more about Tess\\u2019 condition through the Foundation for USP7-Related Diseases, and how you can help advance their research.\\xa0
Show Notes
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Foundation for USP-7 Related Diseases
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