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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
  • Give
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Real World Utilization and Cost of aPCC versus rFVIIa Among Hemophilia Patients with Inhibitors in the US
Introduction and Objective: Limited information exists in the recent literature capturing real- world utilization and cost of bypassing agents among hemophiliac patients with inhibitors in the US. The present study compared the…
Pain and Arthropathy Impact Quality of Life of Young Adults With Hemophilia (ages 18-30) in the United States: Observations From the Hemophilia Experiences, Results and Opportunities (HERO) Study
Objective: To assess quality of life, self-reported comorbidities, health-related quality of life (HRQoL), and impact of hemophilia on activities of young adult (YA) patients with hemophilia (PWH). Methods:…
Hemophilia impacts relationships and employment of young adults (ages 18-30) in the us hemophilia experiences, results and opportunities (hero) study
Objective: To assess impact of hemophilia on relationships and employment during the transition to adulthood in young adult (YA) patients with hemophilia (PWH). Methods: Analysis of US YA-PWH respondents (…
Treatment, Outcomes, and Access to Care Among Young Adults (ages 18-30) With Hemophilia in the US Hemophilia Experiences, Results and Opportunities (HERO) Study
Objective: To assess treatment of young adult (YA) patients with hemophilia (PWH) and issues around access to and use of factor and comprehensive care. Methods: Analysis of US respondents aged 18-30 years…
Addressing patient concerns about product switching in hemophilia A: Evaluating turoctocog alfa data from the guardian™ clinical trial program
Changes in Healthcare Resource Utilization and Haemophilia Related Events in Patients Diagnosed with Haemophilia A
Objective: To evaluate changes in healthcare resource utilization and haemophilia related events among patients diagnosed with haemophilia A between 2008 and 2012. Methods: This retrospective study analyzed…
A Comparison of US Prophylaxis Rates Shows Lower Prescribing for Severe Hemophilia B Patients than Severe Hemophilia A Patients
Objectives: The objective of this study was to compare the rate of prophylaxis between severe hemophilia B and severe hemophilia A patients. Methods: A retrospective cross sectional study was conducted…
Does Quality of Life improve with successful immune tolerance induction? An illustrative case report.
Objective: Having a family member with a chronic disease often increases the burden in the family with more hospital visits, treatment administration, and increased expenses. Management of hemophilia patients with inhibitors can…
Comorbidities among Adults with Hemophilia: Hemophilia Utilization Group Studies (HUGS V)
Objective: To investigate the prevalence of comorbidities among adults with hemophilia in the Hemophilia Utilization Group Studies (HUGS) Methods: Standardized interviews were conducted for two prospective…
Haemophilia A Carriers Experience Reduced Health-Related Quality of Life
Objective: Haemophilia A is an X-linked recessive bleeding disorder that affects males. Emerging data support evidence for increased bleeding in female haemophilia A carriers, and more haemophilia carriers are seeking care in…

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