Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
Nearing the end of their 10-week internship, La’Brittinee and Paul got an opportunity to tour Grifol’s plasma collection center in Frederick, Maryland. Centers like this collect plasma from donors and then return the red blood cells to the donor in one sitting. The plasma, which undergoes several levels of strict testing, is then pooled and […]
Happy summer to all! I’m honored to join the ranks of the Infusing Love bloggers, and appreciate the opportunity to share my family’s stories and perspectives on living with hemophilia. Our family includes myself, my husband Nick, and our son, Liam, who is 4 ½. We live in Vermont right on the border with […]
As noted in our July 10, 2017 story, Bioverativ has filed complaints in the U.S. District Court for the District of Delaware and with the U.S. International Trade Commission alleging that Idelvion, a novel factor IX albumin fusion protein developed by CSL Behring, infringes upon three Bioverativ patents. HFA, in collaboration with the National Hemophilia […]
A vote on the health care bill will happen soon, and our organizations need you to take action. On July 13, 2017, the Senate released another “discussion draft” of the BCRA. Despite promises from numerous lawmakers to change the bill, the latest iteration of the bill actually decreases protections for those with pre-existing conditions. The […]
How did the Hemophilia Memorial at the National AIDS Memorial Grove come to be? In 2016, National AIDS Memorial Grove reached out asking for support for their “Surviving Voices” project. This is a multi-year oral history project meant to ensure that stories and lessons of the AIDS epidemic are captured, curated, and retained for […]
I like control. I like order. I like a plan. I like lists. Not in an overly aggressive way, but in a way that makes me feel calm. If I can plan for it, I can feel in control of it. Hemophilia does not work this way. Hemophilia and all the moving parts involved with […]
Note: The following is an edited version of a press release from Spark Therapeutics. Read the press release from Spark Therapeutics in it’s entirety here. Spark Therapeutics recently announced that 10 participants in its ongoing Phase 1/2 clinical trial of SPK-9001 for hemophilia B, as of the June 5, 2017 data cut off, had their AIR reduced approximately […]
Note: The following is an edited version of a press release from BioMarin. Read the press release from BioMarin in it’s entirety here. BioMarin Pharmaceutical Inc. announced an update to its previously reported interim results of an open-label Phase 1/2 study of BMN 270, an investigational gene therapy treatment for severe hemophilia A. The updated results were presented […]
Note: The following is an edited version of a press release from uniQure. Read the press release from uniQure in it’s entirety here. uniQure N.V. has announced updated results from its ongoing, dose-ranging Phase I/II trial of AMT-060, its proprietary, investigational gene therapy in patients with severe hemophilia B. The data includes up to 18 months of follow-up from the low-dose […]
Note: This story has been sourced from the website, www.thepharmaletter.com and The Australian Business Review. On Friday, July 7, 2017, Bioverativ filed complaints in the U.S. District Court for the District of Delaware and with the U.S. International Trade Commission alleging that Idelvion, a novel factor IX albumin fusion protein developed by CSL Behring, infringes upon […]
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