Amazing Patients and Caregivers

One of the greatest thing about working at Rare Patient Voice is getting the opportunity to meet so many amazing people. Let me tell you about two. Kathryn Ames (I'll mention her by name as she has given me permission) is a terrific mom. She struggled when her son Nicholas, who has severe Hemophilia A… Continue Reading

I just finished reading The Story of the Human Body: Evolution, Health and Disease, by Daniel Lieberman, a professor at Harvard. I recommend it to anyone interested in either human evolution or disease. Lieberman does a great job of describing, in laymen's terms, the evolution of primates up through modern man. How various species, including… Continue Reading

From that gap Rare Patient Voice was born

The first time I went to recruit patients for a market research panel was at the National Hemophilia Foundation annual meeting in Tampa in 1998. What an eye-opener. I had studied Hemophilia on the Internet, but I hadn't met members of the bleeding community. Families upon families came by, met us (my wife came along… Continue Reading

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