Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Twenty-three year old Alex Ell was diagnosed with hemophilia at birth.聽 Hemophilia is a rare genetic bleeding disorder that results in excessive bleeding, occurring spontaneously or as a result of an injury. 聽Bleeding episodes cause聽pain and damage to joints, muscles and organs.聽These episodes are treated聽with an聽intravenous infusion of blood clotting products to replace the missing […]
Reid talks about growing up with hemophilia and the importance of education, self advocacy and social media advocacy.
Our voice is being heard!聽 The media is helping us share our story.聽 Check out our community members who were featured in the news!
Washington, DC:聽 President Barack Obama held a backyard discussion on healthcare reform at the home of Hemophilia Federation of America’s President, Mr. Paul Brayshaw.聽聽Paul, an individual with Hemophilia is a resident of Falls Church, VA. He聽opened the forum with a statement regarding the positive impact of the Affordable Care Act as it relates to individuals […]
Rocky believes that having hemophilia has provided him with many opportunities and credits his camp family for showing him the right path.
Jim, Gio, and Tim talk about their life as young boys with hemophilia.
Roger, a 67 year old with hemophilia is full of wisdom and life experiences.
Chuck and Vicki talk about their family life with hemophilia.
Christian Rodriguez, an HFA聽 advocacy intensive participant is an inspiration to the bleeding disorders community.聽 Christian has made it his mission to improve the lives of himself and the people in his community by sharing his story.聽 The goal of the intensives program is to inspire participants to take an active, grassroots approach to effecting […]
John Reed inspires with his positive outlook on his life with hemophilia.聽 John decided early on that he was not going to let hemophilia control his life, he was going to take control and live his life.
Mark created a Hemophilia Task Force group in Connecticut.聽 This group had state legislators, national non-profit advocates, patients, and hemophilia doctors working together to ensure people with bleeding disorders in CT receive the best care possible.聽 What are you waiting for?! YOU can make a difference in your state too!
Mark and Sasha give us a peek into their lives as a couple dealing with Hemophilia, HIV and hepatitis C.聽 They discuss the importance of community and the value of support from people who understand.
Barry has hemophilia, HIV, and hepatitis C. 聽He discusses the realities of being diagnosed HIV positive as a teenager and the many challenges he has faced throughout his life. 聽Barry hopes by sharing his story he will empower others to share theirs.
Features: Terry Lamb, Karl Weixler, Tera Griffith & Tye Cowans.聽 These four individuals share what life is like being a part of the bleeding disorders community.
“One Man’s Story” By John Jarratt, M. Ed., L.P.C. Download John’s Story It is my hope that the new millennium will bring about a better understanding of hemophilia and bleeding disorders, along with an improved relationship and collaboration with consumers, chapters, foundations, hemophilia treatment centers, clinics, private practitioners, emergency room personnel, national organizations, and industry. […]
The Long Mile by Barry Haarde Download Barry’s Story There was only one more hill to climb as I rounded the corner that brought the finish line into view. I had ridden my bicycle 175 miles since lining up at the starting point back in Houston the day before. After more than 10 hours on […]
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