Families, physicians at Rare Disease Day forum call for continued research


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  • Tennor Orem, UT
    March 1, 2014 3:12 p.m.

    My sister and daughter have inherited a very rare disease called Xeroderma Pigmentosum. They must avoid all exposure to sunlight. In the US, only one per million have the disease. I'm glad to see the Rare Disease Day bring awareness to all those dealing with rare diseases. You can find more about XP at http://www.annaliberty.com.