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Alagille Syndrome
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Rare diseases come with a substantial cost burden

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Several recent studies have brought to light the substantial economic burden—both medically and non-medically—of rare diseases. The studies, which were summarized in a recent Health Affairs article, were conducted independently of one another but shared many similar themes.

According to the Health Affairs article, each study concluded that rare diseases create a significant economic burden on the US, especially when compared to the burden felt by patients with more common diseases; limited data and a lack of standardization make quantifying rare disease patients difficult; and the full impact of the burden of rare diseases still needs to be analyzed.

Factors that contribute to the cost burden include delayed diagnosis, direct medical costs, indirect costs, and high costs associated with new therapies.

“Rare diseases and conditions pose a tremendous collective cost burden to the country, likely in excess of $1 trillion annually. Collectively, rare diseases are as costly or potentially more costly than many more common chronic conditions, although the lack of a standardized approach to calculating such data makes direct comparison challenging,” the authors concluded.

Read the full Health Affairs article here.

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