Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Terry talks about growing up with hemophilia and how staying active has helped him live a wonderful life!
John Jarratt speaks to a group about growing up with hemophilia. This is a longer piece, so grab a cup of coffee and we promise you will gain some perspective from John’s wisdom!
For some, the teenage years are the time to dream. But Leland Smith, who has severe hemophilia A, has always had to be firmly grounded in reality. “[Careers] like movie star or athlete aren’t even in the books,” he says wistfully. Leland’s hemophilia comes with a complication called an inhibitor: a resistance to the medication […]
Watch this video to understand why comprehensive care is vital for people in the hemophilia community to live a long, healthy life. You will hear from individuals who have directly been impacted by comprehensive care and an individual who works in one of the centers and has seen first hand the success of comprehensive care.
Anna and Matt have adopted several children, two who have hemophilia. Anna and Matt try to normalize hemophilia as much as they can and realize that Chris and Xander don’t know anything different.
Reid talks about growing up with hemophilia and the importance of education, self advocacy and social media advocacy.
This video features Sal Livolsi & Linda Wyman-Collins; helping women with bleeding disorders is close to both of these community members hearts. Sal has a wife and son with hemophilia and Lew talks from personal experience of having a bleeding disorder.
My work out schedule includes weight lifting three times a week, and as you know, a great deal of bicycling. I’m currently riding between 100 and 150 miles on weekends and am doing 30 minute spins on a stationary bike 2 or 3 times during the workweek to supplement that. In ’06, before beginning nearly […]
Rocky believes that having hemophilia has provided him with many opportunities and credits his camp family for showing him the right path.
Dennis and Denise have a teenage son with hemophilia, they encourage their son to focus on school because he needs to find a stable job with good insurance.
Pam helped Ann through the diagnosis of her son’s bleeding disorder.
Jim, Gio, and Tim talk about their life as young boys with hemophilia.
The Forbes family shares their story of visiting the Oval Office.
Celebrate Rare Disease Day on February 28th 2010!聽 Write your governor to ask for the last day in February to be proclaimed Rare Disease Day in your state.聽聽 Thank you to NORD, the National Organization for Rare Disorders for organizing this event!
The Cleghorn family shares their story of having a young child with hemophilia.聽 They talk about prophylaxis treatment and transitioning from a portacath to to a vein.
Jim and Alex are two young men with hemophilia.聽 They talk about the positive impact of camp and the importance of advocating for the bleeding disorders community and themselves.
I learned that legislators do want to hear from me.
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