Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
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. The company has disclosed preliminary initial data from the Phase 1/2 dose-escalation clinical trial for SPK-8011, a novel bio-engineered adeno-associated viral (AAV) vector utilizing the Spark200 capsid and containing a codon-optimized human factor […]
With a new diagnosis of hemophilia my world was turned upside down. What’s only been 4 months since Maddox was diagnosed feels like a year or two. I feel like I’ve grown so much in just a few months. I have put my life vest on and jumped right in. While, sometimes I’m afraid […]
Even though Men’s Health Month was in June, we can always take steps towards a healthier lifestyle no matter what time of year it is. In general, men experience poorer health and die younger than women in the U.S., according to the Department of Health and Human Services. The points below are important for all […]
Dear Addy, I’m having trouble with my health insurance, which is making it difficult to manage my bleeding disorder. What can I do to make my concerns heard? Signed, Help Wanted Dear Help, Thank you for reaching out to HFA about the trouble you’re having with your health insurance. You are not alone in your […]
As I walk through the aisles of our local office supply store, I can’t help but to get a tinge of sadness. The smell of fresh paper, pens, pencils, and crayons are enough for this former teacher to break down right there in the middle of Office Depot. Not that I am unhappy doing what […]
The Hemophilia Memorial in the National AIDS Memorial Grove in San Francisco, CA, will be a place where we can remember the people in our community who lost their lives to AIDS. This will be a place of remembrance, healing, and hope. The founding partners of the Hemophilia Memorial, HFA, the National Hemophilia Foundation, and […]
Earlier this summer we welcomed our summer policy and government relations interns to our D.C. office. La’Brittinee and Paul are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, La’Brittinee and Paul: […]
The early years of my motherhood experience were pretty lonely. We lived across the country from our extended family and I didn’t know any one in the neighborhood, and frankly, the other moms I did meet weren’t exactly people I wanted to socialize with. My go-to’s for parenting advice were books I had bought […]
On Tuesday, the Senate will likely vote on a “Motion to Proceed,” which is the first step to open debate on health reform legislation. If the motion passes, they may consider a 2015 bill that will repeal parts of the Affordable Care Act without replacing it, or the Better Care Reconciliation Act (BCRA), the recent […]
Dear Addy, I have heard of HFA’s PRIDE Project but am not clear on how I can participate and what I can learn from my participation. As a bleeding disorders community member, what do I need to know about the project and can I really do research? Signed, Researching Research Dear Researcher, You do research […]
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