Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Dear Addy, I watched a few of HFA鈥檚 PRIDE Project webinars. Can you explain to me how engaging in research will make me a better advocate? Signed, Curious about Research Dear Curious, It鈥檚 great to hear that you watched some of the PRIDE Project webinars, as those webinars provide an introduction to and basic training […]
The field of gene therapy is a hot topic of discussion. With multiple clinical trials ongoing, people with hemophilia are at the forefront of gene therapy research. Has anyone ever asked you about your thoughts and opinions about gene therapy? Here鈥檚 your chance to make them known! Hemophilia Federation of America Research is asking people […]
Dear Addy, How do I approach my doctor with questions on new research about a treatment for my bleeding disorder? There are so many novel treatments under development or newly available! I want to make sure that my doctor considers my input and will work with me to select the treatment that best serves my […]
HFA鈥檚 Research Team gave and received early an holiday gift this year: knowledge. We attended the 59th annual meeting of the American Society of Hematology (ASH) in Atlanta, Georgia, December 9-12. The unofficial song of the meeting was 鈥淟et it Snow鈥 as that (along with the once standing Georgia Dome) is what was on the […]
Dear Addy, What is the HFA Community Research Portal and why is it important to me? Sincerely, Research Meets Advocacy Dear Research, The HFA Community Research Portal is an exciting new research project that will provide individuals with bleeding disorders the chance to directly engage in meaningful research projects. The HFA Community Research Portal is […]
HFA to Present CHOICE Project Data at World Federation of Hemophilia World Congress 聽The CHOICE Project was a first-of-its-kind data collection from people with hemophilia and other bleeding disorders. FOR IMMEDIATE RELEASE: July 21, 2016 Contact: Sonji Wilkes (202)-675-6984 or email at s.wilkes@hemophiliafed.org Hemophilia Federation of America (HFA) announced today that it will present new […]
In our family, we are open to participating in research, thinking, 鈥渋f it can help our kids or help a future family or patient then we are all for it.鈥 So when the opportunity arose to be enrolled in a trail to test long lasting factor, we jumped on it. We did our homework and […]
By instilling confidence in U.S. products and technologies, we stimulate economic growth and open markets overseas. By聽MARGARET A. HAMBURG Courtesy of the Wall Street Journal There are encouraging signs that the pharmaceutical industry’s pipeline of new products is not as stalled as some say.聽 Already in 2011, the Food and Drug Administration (FDA) has approved […]
New England Journal of Medicine Auditing Access to Specialty Care for Children with Public聽Insurance June 15, 2011 Joanna Bisgaier, M.S.W., and Karin V. Rhodes, M.D. Evidence suggests that the 37 million children covered by Medicaid-CHIP聽are less likely to receive specialty care than children covered by commercial insurance. Children covered by Medicaid-CHIP may face greater […]
The Institute of Medicine (IOM) is undertaking a study that will make recommendations on the criteria and methods for determining and updating the essential health benefits package in health care reform. As you may recall, HFA submitted comments to the initial survey conducted in December. The outcome of this study will be a published report […]
Health care reform will have a profound impact on persons with bleeding disorders as health insurance companies take steps to comply with various insurance market reform provisions. However, changes stemming from the health care reform law are only one piece of the health care coverage puzzle. 聽In light of these challenges, the Hemophilia Federation of […]
On Thursday September 9, the Center on Health Care Effectiveness held its inaugural Issue Form: “Politics and Policy of Comparative Effectiveness: Looking Back, Looking Ahead” 聽The forum examined: the creation of the new center at Mathematica, what is Comparative Effectiveness Research (CER) 聽and how health care reform will influence the future of comparative effectiveness in […]
On Wednesday September 8, the Kaiser Family Foundation held a forum examining the health care issues facing people with disabilities and the opportunities and challenges presented by the new health care reform law enacted earlier this year.聽 The discussion explored the changes in health reform that could affect access to affordable health care for people […]
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