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Rare diseases, collectively, can not be considered rare at all. According to the National Institute of Health, approximately 30 million Americans that makeup 10% of the total American population, are affected by one of the 7,000 known rare diseases. However, the challenges manifested by the Rare patient population are tremendous ranging from delayed diagnosis, lack of skilled physicians, lack of a cure, cost of available therapies, and so on. Von Hippel-Lindau (VHL) disease is an autosomal dominantly inherited tumor syndrome that leads to the development of benign and malignant tumors in different parts of organs, primarily including the nervous system and in...
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