You have been diagnosed with a rare bone marrow disorder that affects only 2 people out of 1 million.

You have been diagnosed with a rare bone marrow disorder that affects only 2 people out of 1 million. The disease is potentially life threatening, but your symptoms are currently only mild and do not yet present a major concern. Your physician recommends that you go to the Mayo Clinic in Rochester, Minnesota, for further diagnosis and possible treatment. As you do some research on the Internet, you find a support group for those afflicted by this rare disease. You are alarmed to hear that the disease can cause a very rapid decrease in the quality of one’s life, with many victims confined to a wheelchair or bed and in great discomfort for the last months of their life. When you meet with specialists at the Mayo Clinic, they provide a much more optimistic outlook and claim that medical breakthroughs in treating the disease have been made. You do not know what to believe. You wonder about reaching out to the support group to get further information or to convey what doctors have told you. What would you do?

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