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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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NBDF’s Established Initiatives & Impact >

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FDA Approves Pair of Cell-Based Gene Therapies for Sickle Cell Disease
This past week saw the approval of two new therapies, representing significant scientific breakthroughs in the field of cell-based gene therapy to treat patients with sickle cell disease (SCD), a rare condition historically associated with few…
CSL Presents Three Year Treatment Data for Hemophilia B Gene Therapy
CSL Behring recently announced three-year post treatment data from clinical trial participants who received a one-time infusion of Hemgenix® (etranacogene dezaparvovec), an adeno-associated virus (AAV) vector-based hemophilia gene therapy. Hemgenix…
NBDF and ATHN Collaboration
The National Blood Disorders Foundation (NBDF) and the American Thrombosis & Hemostasis Network (ATHN) are collaborative partners that share many key aspects of their missions, most importantly, improving the lives of people affected by…
FDA Accepts Biologics License Application for Marstacimab
Pfizer Inc. recently announced that the U.S. Food and Drug Administration (FDA) has accepted a Biologics License Application (BLA) for marstacimab, its investigational hemophilia therapy that targets an anticoagulant protein known as tissue factor…
Eric Marcum
Yale Researchers Explore the Possibilities of von Willebrand Factor
Researchers at the Yale School of Medicine have been studying the key clotting protein von Willebrand factor (VWF), to shed light on the processes by which it is stored and released in response to an injury. As VWF is the deficient protein in many…
Pilot Study Explores Educational Needs of HTC Physical Therapists
Though it is generally recognized in the bleeding disorders community that physical therapists (PTs) are essential members of the core interdisciplinary teams of U.S. hemophilia treatment centers (HTCs), understanding of their educational/resource…
Government Relations Update - December 2023
Washington Days: Registration for Washington Days is now open and closes on January 15th.  Register today to join advocates nationwide in Washington D.C. on March 6-8, 2024 to advocate for the HELP Copays Act as well as key…
Recommendations versus Practice: Physical Therapy at HTCs
  Join us to hear the results of a Pilot Study of US HTC Physical Therapists' Concordance of PT MASAC Recommendations and Educational Needs. NBDF's Wednesday Webinars are a free education series open to providers and community members.…
New year, new health plan: Are your medications covered?
  Formulary restrictions are one of the primary access barriers to inheritable blood and bleeding disorders treatment. With health plan coverage changes happening again this year, join NBDF and HFA to learn about these restrictions, how we'…

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