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Learn about new treatment, changes in insurance, parenting and more. PEN, written by parents and patients, for parents and patients—the oldest and most trusted newsletter on hemophilia in the US.


Success as a Hemophilia Leader
Effective leadership makes the difference between passively accepting an uncertain future with a bleeding disorder, and achieving outcomes like reliable medical treatment,  a unified community and advocating for change.

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New Therapies, New Era

I attended the New England Hemophilia Association’s Consumer Medical Symposium Saturday in Portland, Maine. It was fabulous! Over 200 consumers, medical staff and guest speakers

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