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Home
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      • 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!
      • Register to Vote
      • 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 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
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      • Clinical Trials
      • Bleeding Disorders Camps
      • Community Voices in Research
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      • Patient Assistance Programs
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      • Donate Now
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      • Donate Securities or Cryptocurrency
      • Give Monthly
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      • 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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NBDF’s Established Initiatives & Impact >

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Trial Results for Investigational Glanzmann Thrombasthenia Therapy Presented at ASH

Trial Results for Investigational Glanzmann Thrombasthenia Therapy Presented at ASH
  • Read more about Trial Results for Investigational Glanzmann Thrombasthenia Therapy Presented at ASH
Sutacimig is a laboratory-engineered bispecific antibody being developed as the first-ever prophylactic treatment for individuals with Glanzmann thrombasthenia.

HELP Copays Act Reintroduced to Improve Patient Access

HELP Copays Act Reintroduced to Improve Patient Access
  • Read more about HELP Copays Act Reintroduced to Improve Patient Access
NBDF supports efforts to ensure patients with bleeding disorders can afford life-saving medications.

Five Year Hemgenix® Hemophilia B Trial Data Published in NEJM

Five Year Hemgenix® Hemophilia B Trial Data Published in NEJM
  • Read more about Five Year Hemgenix® Hemophilia B Trial Data Published in NEJM
Hemgenix® is an adeno-associated virus (AAV) vector-based hemophilia gene therapy product received approval by the U.S. Food and Drug Administration in November 2022.

Government Relations Update – November 2025

Government Relations Update – November 2025
  • Read more about Government Relations Update – November 2025
Congress extends short-term funding while major health programs hang in the balance. Get updates on ACA tax credits, Medicaid pricing, medical debt rules, and state actions impacting the bleeding disorders community.

Interim Data for Investigational Sub-Q VWD Therapy Presented at ASH

Interim Data for Investigational Sub-Q VWD Therapy Presented at ASH
  • Read more about Interim Data for Investigational Sub-Q VWD Therapy Presented at ASH
VGA039 is a subcutaneous therapy designed to target the clot regulating protein known as Protein S to regulate excessive clotting and coagulation in people with all subtypes of VWD.

Facts About Inhibitors Now Available in Arabic!

Facts About Inhibitors Now Available in Arabic!
  • Read more about Facts About Inhibitors Now Available in Arabic!
This booklet includes information about how inhibitors develop in people with hemophilia, key risk factors, and tips on getting screened.

NBDF Highlights Resources for Caregivers of People with Bleeding Disorders

NBDF Highlights Resources for Caregivers of People with Bleeding Disorders
  • Read more about NBDF Highlights Resources for Caregivers of People with Bleeding Disorders
This edition of the Resource Roundup includes resources that address everyday challenges universal to all caregivers as well as those unique to individuals with bleeding disorders.

NBDF’s 2025 Research Roundtable: Advancing Bleeding Disorders Research for Women and Girls

NBDF’s 2025 Research Roundtable: Advancing Bleeding Disorders Research for Women and Girls
  • Read more about NBDF’s 2025 Research Roundtable: Advancing Bleeding Disorders Research for Women and Girls
The meeting convened researchers, industry leaders, nonprofit organizations, and lived experience experts to discuss ways to enhance the inclusion of women and girls with bleeding disorders in research.

Women and Girls with Hemophilia Booklet Now Available in Arabic

Women and Girls with Hemophilia Booklet Now Available in Arabic
  • Read more about Women and Girls with Hemophilia Booklet Now Available in Arabic
This Arabic publication is an excellent resource for women and girls with hemophilia, caregivers, and health care providers who can utilize it to help inform shared decision making with their patients.

Spotlight on SeraGene, a Pathway to Cure’s Portfolio Company

Spotlight on SeraGene, a Pathway to Cure’s Portfolio Company
  • Read more about Spotlight on SeraGene, a Pathway to Cure’s Portfolio Company
The pre-clinical stage biotech focused on RNA and nanomedicine.

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