HemaBlog™

Gene Therapy Clinical Trials and You!

A special request and letter to the hemophilia B community! As you may know, since 1990 LA Kelley Communications has been educating the hemophilia community about hemophilia. In the February 1998 issue of PEN, we actually were the first to break the news to the world about the first hemophilia gene therapy trials. Gene therapy

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HFA: 25 Years of Advocacy

Hemophilia Federation of America (HFA) celebrated its 25th anniversary this past week in San Diego. I remember HFA in its infancy, when its annual meeting drew about 100 attendees. This past week over 1,200 people, mostly consumers, gathered from all parts of the country to learn, socialize, hold remembrances, and give awards. An HFA meeting

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Remembering a Visionary

March is Hemophilia Awareness Month, and this year, also the 15th anniversary of the passing of a visionary in our community: Dave Madeiros. Dave passed away from complication of hepatitis C at age 47 in Boca Raton, Florida, just two days after I had visited him. He was a friend, mentor, businessman and amazing visionary.

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Sage Advice to Younger Guys

Stephen C. Place Here’s my advice for “bleeders.”  A bleeding disorder is lifelong, from birth and until death.  My perspective is from someone age 64, with mild hemophilia A.  My motto is “Firsthand personal experience trumps all.” The most important priority in the life of a bleeder and their family is to accept the disorder. 

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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 attended. As always, after 31 years in this community, it’s like a family reunion. But it’s also a time of great learning. We were fortunate to have Dr. Steven Pipe,

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