AFFIRM: The Next Generation of Hemophilia Leaders

April 22, 2014

AFFIRM (Adult Fellowship for Integrating Responsible Mentors) is a three- year leadership development program targeting men ages 25 to 35 from around the world . In its second term, ten men have demonstrated dedication and leadership within their local community to improve the lives of those with a bleeding disorder (see list below). Twice a […]

Infusing Love: The Union Behind My Reunion

April 16, 2014

The thing about kids is that they grow up  they move on and make their own choices. That’s what Max did – he moved on and made his own choices. That’s not to say he has always made GOOD choices. But what would the point of all the years of teaching him to be independent […]

Rare Disease Day: Feb. 28th 2010

January 14, 2010

Celebrate Rare Disease Day on February 28th 2010!  Write your governor to ask for the last day in February to be proclaimed Rare Disease Day in your state.   Thank you to NORD, the National Organization for Rare Disorders for organizing this event!

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