Andy Matthews discusses advocacy issues that he feels are important.
Ryan and EJ share their experiences growing up with hemophilia. The future of our community is hopeful with the advancements in care and support from others who understand!
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 […]
Twenty-three year old Alex Ell was diagnosed with hemophilia at birth. Hemophilia is a rare genetic bleeding disorder that results in excessive bleeding, occurring spontaneously or as a result of an injury. Bleeding episodes cause pain and damage to joints, muscles and organs. These episodes are treated with an intravenous infusion of blood clotting products to replace the missing […]
Health care reform is a controversial issue, but for families dealing with chronic medical conditions, there is no controversy. For Jenni Dunham of Tennessee, whose husband Chris and son Jacob both have von Willebrand disease, the future has gotten “much more hopeful” since the reform. Jenni estimates that Jacob, now three, would have reached the […]
Written Statement of Lisa Grasshoff Paragon Hemophilia Solutions before the HELP Committee on United States Senate
View Lisa Grasshoff’s Offical Written Statement
“Full Committee Hearing – The Affordable Care Act: The Impact of Health Insurance Reform on Health Care Consumers” Lisa Grasshoff’s testimony to the HELP(Health, Education, Labor and Pensions) Committee begins at minute 112:50. Watch Lisa’s testimony
For parents of children with hemophilia, the future is a constant worry. While this will always be the case, the recent healthcare reforms have provided a little bit of relief. Heidi and Andrew Forrester from Washington are the parents of William, a two-year-old with severe hemophilia A. While William was lucky enough to be covered […]
Washington, DC: President Barack Obama held a backyard discussion on healthcare reform at the home of Hemophilia Federation of America’s President, Mr. Paul Brayshaw. Paul, an individual with Hemophilia is a resident of Falls Church, VA. He opened the forum with a statement regarding the positive impact of the Affordable Care Act as it relates to individuals […]
The Forbes family shares their story of visiting the Oval Office.
Assisting and Advocating for the Bleeding Disorders Community