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Rare Can Be Good

I’m a regular Red Cross blood donor. I’m not a saint or anything. My father always gave blood, and I remember first giving in high school. I hate needles, but I know it doesn’t hurt, so I just look the other way. Now I give “double red” which to me means they only take me… Continue Reading

Sympathy and Empathy

This spring I've been to many patient events like walks and forums - for multiple sclerosis, cystic fibrosis, sickle cell, pulmonary arterial hypertension, and Waldenstrom's Macroglobulinemia. As you can expect, we always feel sympathy for patients suffering from such conditions. It hits  home when you meet patients in person and can see their difficulties, like… Continue Reading

Today I attended my first Coalition for Hemophilia B Annual Symposium (the group’s 8th annual) in New York City. What a terrific event. I got to meet several of our Rare Patient Voice members and I learned a lot. I’d like to share some of what I learned today. Since some of it applies equally… Continue Reading

Reputation is All

Yesterday was the worst day in my professional life. What happened? Did I lose a client? Have a difficult project? Have an upset employee? No, yesterday I was accused of being unethical! That really stings, because of everything that I do, that I try to teach my kids, and that I learned from my parents… Continue Reading

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

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