Today is Rare Disease Day 2009. Join us in recognizing the reality of rare disorders and celebrating the beauty in the eyes of children living with rare disease and those who have lost their lives.
rare diseases
Raise Awareness of the Reality of Rare Disorders–Susannah Fox
Wendy White, Founder and President of Siren Interactive, contributes this essay: One in ten Americans is living with a rare disorder, but they are often overlooked in the media, in research circles, and in their local communities. The 2nd Annual Rare Disease Day on Feb. 28, 2009, is an opportunity to change that.
Three Simple Rules–Susannah Fox
When in 2002 we came out with our bold new concept of “information therapy” I was sure that Tom would love the idea of doctors or health plans prescribing information to consumers. He didn’t. He was concerned that the prescribed information from clinicians would undermine the patient’s right or ability to search for information from other self-helpers…
…I think I am there—but then Tom might still not agree—for I still think that the self-help world will work better when the patient is also being prescribed information as a part of the process of care.
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