Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
Each year, the HFA staff recognizes the national spirit and remarkable volunteerism for HFA with the #bleedingdisorders community. As #VolunteerAppreciationMonth comes to a close this week, we will be recognizing award winners from #HFA2017. Today, we remember Star Tyree, a long-time HFA supporter, volunteer, and friend. Starlyn (Star) Tyree was a former Executive Director […]
My name is Rick Kelly, and my wife, Josie, I are the proud parents of Forrest. Forrest has a rare bleeding disorder called afibrinogenemia, or Factor I deficiency. This is the story of afibrinogenemia in three anecdotes that explain what afibrinogenemia is, the current state of treatment and its outlook for the future. In sharing […]
Ryan White died at the age of 18 on April 8, 1990. During the 1980s, Ryan bravely became a national spokesperson and symbol of hope for the hemophilia and HIV/AIDS community after being expelled from middle school due to community fears that the virus would spread to other children. Learn more about Ryan’s legacy by clicking […]
Patrick is a typical 12 year old who happens to have a rare bleeding disorder called, qualitative platelet disorder; the diagnosis is descriptive rather than specific – we have been told it is a one in a million condition and they do not know why his platelets do not function properly. We also don’t know […]
Note: The following is an edited form of a press release from the University of North Carolina School of Medicine. The original release can be read here. A single injection. That’s all someone with a factor VII deficiency would need for a life-long cure, thanks to a new gene therapy treatment developed in a collaboration of […]
Note: This story was originally published in the January 2016 issue of BioSupply Trends Quarterly. It can be read in its original format here. By Meredith Whitmore In this brave new world of medicines, more and more physicians are prescribing a biologic. Perhaps they have even witnessed a patient’s remarkable transformation thanks to biologics such […]
Note: The following is an edited press release from Arsia Therapeutics, Inc. The original release can be read here. Arsia Therapeutics, Inc., a Cambridge based company, announced a collaboration with Biogen on December 16, 2015. Arsia and Biogen will focus on providing meaningful treatment administration improvements for hemophilia patients by enabling subcutaneous versions of treatments […]
The U.S. Food and Drug Administration today approved Vonvendi, von Willebrand factor (Recombinant), for use in adults 18 years of age and older who have von Willebrand disease (VWD). Vonvendi is the first FDA-approved recombinant von Willebrand factor, and is approved for the on-demand (as needed) treatment and control of bleeding episodes in adults diagnosed […]
HFA recently became a charter member of Partners for Better Care (PBC), a nonpartisan coalition of patients and patient groups that seeks to improve access to quality medical care. The following is a press release from PBC about this partnership. Patient advocacy groups announced on Thursday, December 3, the launch of Partners for Better Care (PBC), a nonpartisan coalition beginning with over 10 […]
Dear Addy, I keep hearing about biosimilars. What are they, and how do they differ from generic drugs? Sincerely, Curious About Products Hi Curious, Thanks for your question. A biosimilar is a pharmaceutical drug that is made to have similar active properties as a biological drug that has already been licensed. Biologics are really important […]
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