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Home
  • Who We Are
    • Our Story
      • Mission & History
      • What We Do
      • What Do We Value?
      • Health Access
      • NBDF Reports
      • Financial Statements
      • Media Newsroom
      • Educate to Elevate
      • The National Hemophilia Foundation Has a New Name
      • The Red Thread: 75th Anniversary Celebration
    • Our Team
      • Staff
      • Board of Directors
      • MASAC
      • Meet the NYLI
      • Nursing Working Group
      • Physical Therapy Working Group
      • Social Work Working Group
      • LEE Research Advisory Council
    • Our Partners
      • Partners In Progress
      • The ACT Initiative
      • Red Tie Society
      • CDC Coop Agreement
      • Pathway to Cures
    • Careers
      • What Do We Value?
      • Career Opportunities
      • Volunteer Opportunities
  • Bleeding Disorders A-Z
    • Overview
      • Fast Facts
      • What is a Bleeding Disorder?
      • History
      • Types of Bleeds
      • Inhibitors
      • Women and Bleeding Disorders
    • Types
      • Hemophilia A
      • Hemophilia B
      • Von Willebrand Disease
      • Other Factor Deficiencies
      • Inherited Platelet Disorders
    • Treatment
      • Comprehensive Medical Care
      • MASAC For You
      • Treatment Guidelines (MASAC)
      • Current Treatments
      • Innovative Therapies
      • Clinical Trials
      • Shared Decision-Making
      • Hemophilia Treatment Centers
    • Healthcare Coverage
      • Choosing an Insurance Plan
      • Private Insurance
      • Public Insurance
      • Health Insurance Toolkit
  • Educational Programs
    • Education
      • Bleeding Disorders Conference
      • Inhibitor Education
      • Steps for Living
      • Online Education
      • Rare Bleeding Disorders
      • Von Willebrand Disease
      • Mental Health
      • Gene and Innovative Therapies
      • Women
      • Educational Programming
      • Clotting Cascade
    • Training
      • Youth Leadership (NYLI)
    • Outreach
      • THRIVE
      • THRIVE - en español
      • Undiagnosed
      • Guías Culturales
  • Advocacy
    • Federal Priorities
      • Access to Care
      • Federal Programs
      • Medicare
      • Medicaid
      • Blood & Blood Product Safety
      • Make All Copays Count
    • State Priorities
      • Utilization Management
      • Patient Out-of-Pocket Expenses
      • Medicaid
    • How You Can Take Action
      • Voices for Policy Change!
      • Washington Days
      • Advocacy Do’s and Don’ts
      • 6 Steps for Grassroots Advocacy
      • Tell Your Story
    • Managed Care & Payers
      • Collaborating on Coverage
      • Quality of Care Guidelines
      • CME/CE Webcast Series
      • Educational Web Portal
      • Quality Improvement & Cost Management
  • Research
    • Research Projects
      • Foundation Research
      • Funded by Foundation
      • Presented at Our Conference
      • Research Journal Club
      • Research Roundtable
      • Clinical Trial Essentials
      • coreHem Mental Health Tool
    • Fund Your Research
      • Judith Graham Pool Postdoctoral Research Fellowship
      • NBDF-Sanofi Career Development Award
      • Nursing Excellence Fellowship
      • Physical Therapy Excellence Fellowship
      • Social Work Excellence Fellowship
    • Community Voices in Research
      • What is CVR?
      • How & Why Should I Participate?
      • Impact on Research
      • Frequently Asked Questions
      • Login to CVR
    • Bleeding Disorders Research Collaborative
      • What is the Bleeding Disorders Research Collaborative?
      • The BDRC Structure and Research Priorities
      • Lived Experience Experts (LEEs) Leading the Way
      • How to Get Involved
      • Our Journey Together
      • BDRC Resources
  • Healthcare Professionals
    • Guidelines on Care
      • Comprehensive Care
      • MASAC Documents
      • MASAC Minutes
      • Products Licensed (US)
      • Emergency Management
      • Snapshots of VWD Guidelines
    • Education & Resources
      • NBDF-Takeda Clinical Fellowship Program
      • NBDF’s Collaborative Learning Exchange
      • Online Education for Providers
      • Live & Online Learning (Partners)
      • Rare Coagulation Disorders Resource Room
      • Peer-reviewed Journals
      • NBDF Publications
      • Other Associations
    • Allied Healthcare
      • Nursing
      • Physical Therapy
      • Social Work
      • Other Interdisciplinary Healthcare Providers
  • Community Resources
    • Request Information
      • Contact Us
      • The Neil Frick Resource Center
      • Read Our Publications
      • Subscribe for Email Updates
      • Get HemAware Magazine
      • Newsletter Archive
      • Wednesday Webinar Series
    • Resources Near You
      • Chapters
      • Hemophilia Treatment Centers
      • Clinical Trials
      • Bleeding Disorders Camps
      • Community Voices in Research
    • Financial Assistance
      • Scholarships
      • Patient Assistance Programs
  • Make a Difference
    • Donate
      • Donate Now
      • Donor Advised Funds
      • Donate Securities or Cryptocurrency
      • Give Monthly
      • Planned Giving
    • Join Us
      • Become a Corporate Partner
      • Bleeding Disorders Awareness Month
      • Find a Walk
      • Participate in Research/CVR
      • Why Give?
    • More than a Donation
      • Create Your Own Fundraiser
      • Fundraise on Social Media
      • Run in a Marathon
      • Matching Gifts
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Long-term safety and efficacy of recombinant factor VIII Fc (rFVIIIFc) for the treatment of severe hemophilia A: United States subgroup interim analysis of the ASPIRE study
Objective: The ongoing rFVIIIFc extension study, ASPIRE (clinicaltrials.gov #NCT01454739), evaluates the long-term safety and efficacy of rFVIIIFc in adults, adolescents, and children with severe hemophilia A. Here we report…
Associations Between Annual Bleeding Episodes and Financial Burden of Illness Among Persons with Hemophilia A and B in the United States
Objective: To evaluate the effect of bleeding episodes on hemophilia patient burden of illness using observational data. Methods: Between 2005-2007 and 2009-2012, the Hemophilia Utilization Group Studies Va…
Relative Health Status of Young Adults in the Hemophilia Utilization Group Studies (HUGS)
Long-term safety and prophylactic efficacy of once-weekly subcutaneous administration of ACE910 in Japanese hemophilia A patients with and without FVIII inhibitors: Interim results of the extension study of a phase I study
Pegylated full-length recombinant factor VIII (BAX 855) for prophylaxis in previously treated adolescent and adult patients with severe hemophilia A
Objective: To assess the pharmacokinetics (PK) and efficacy of prophylactic treatment with BAX 855 - a novel polyethylene glycol (peg)ylated full-length recombinant factor VIII, built on the rAHF-PFM (ADVATE) protein - by age…
Reduced Polyethylene Glycol–Conjugated B-Domain–Deleted Factor VIII (PEG-BDD-FVIII) Clearance: Selective PEG Steric Modulation Without Affecting Potency
Prophylactic factor VIII (FVIII) replacement therapy in hemophilia A requires frequent administration because of the short half-life of FVIII. Polyethylene glycol (PEG) conjugation is thought to extend FVIII half-life by decreasing hepatic clearance…
Bleeding Disorders Camps
Summer is a season filled with excitement and adventure, especially for children. It's a time when kids can immerse themselves in new experiences, make lifelong friendships, and create cherished memories. For parents of children with bleeding…
A Novel Anti-Tissue Factor Pathway Inhibitor Antibody, BAY 1093884, Prevents Bleeding in Hemophilia A Mice
Background: BAY 1093884 is a fully human monoclonal antibody against tissue factor pathway inhibitor (TFPI) developed as a bypass agent for hemophilia patients with inhibitors. It restores thrombin burst for stable clot formation…
Global Knowledge and Confidence Assessment of Hemophilia Clinical Practice Approaches Among Pediatricians
Objective: Clinical knowledge gaps of hemophilia can affect patient outcomes through delayed diagnosis/referral as well as improper monitoring and interventions. A study was undertaken to identify and characterize clinical…
HHS Announces New Coronavirus Funding for Healthcare Providers
The U.S. Department of Health and Human Services (HHS), through the Health Resources and Services Administration (HRSA), announced $20 billion in new funding for providers on the frontlines of the coronavirus pandemic. Eligible providers may begin…

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