Saturday, February 28, 2009

Today is Rare Disease Day

Rare Disease Day 2009

Excerpts from

"The main objective of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives."

"Rare diseases are chronic, progressive, debilitating, disabling, severe and often life-threatening. Information is scarce and research is insufficient.People affected face challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support.Many rare disease patients are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles."

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