‘Rare’ Disease Awareness

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Marie Waldron
Marie Waldron. Valley News/Courtesy photo
Assemblymember Marie Waldron Special to Valley News As co-chair of the Assembly Rare Disease caucus, we recognize the struggle of patients and their families living with rare diseases. Among these are almost 7,000 diseases and conditions considered rare, with 80% of those considered ultra-rare. By definition, a disease is considered rare when it affects fewer than 200,000 people. Since only a relatively small number of people are involved, treatments for these diseases can be limited, have sky-high costs or are completely unavailable. That’s where orphan drugs come in. In 1983, President Ronald Reagan signed the Orphan Drug Act to encourage development of medical treatments for rare diseases that affect small numbers of persons. Because these diseases affect relatively few peopl
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