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Home
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    • 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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Genentech Presents New Hemlibra® Safety Data During Virtual ISTH Congress
Genentech recently announced the results from a second interim analysis of the STASEY study, designed to examine Hemlibra® as it relates to safety, efficacy and health-related quality of life in people with…
Spark Presents Gene Therapy Trial Updates at ISTH Virtual Congress
Spark Therapeutics recently released updated clinical study data on SPK-8011, the company’s investigational gene therapy candidate for hemophilia A. SPK-8011 is administered via a one-time intravenous infusion, which is designed to elicit the…
Town Hall Webinar - Anger Happens: Coping During COVID-19
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Two Deaths Reported in AAV-Based Gene Therapy Trials for Rare Muscle Disorder
NHF has learned of the recent death of a patient who had been participating in a gene therapy clinical trial for a rare muscle disorder known as X-Linked Myotubular Myopathy (XLMTM), which occurs almost exclusively in males and is characterized…
CSL Acquires Hemophilia B Gene Therapy Candidate from uniQure
CSL Behring recently announced that it has agreed to acquire exclusive global license rights from uniQure, to commercialize etranacogene dezaparvovec (AMT-061), an investigational gene therapy candidate for patients with severe and moderately severe…
Sanofi and Sobi Make Additional Factor Donation to Aid Program
Sanofi and Sobi, along with the World Federation of Hemophilia (WFH) and WFH USA recently announced as extension of the two companies’ support of the WFH Humanitarian Aid Program. The enhanced support includes an additional donation of up to 500…
New Partners Module Explores Home Treatment Logs
The Partners in Bleeding Disorders Education Program has announced the launch of a new online learning module, “Accounting for Home Care: The Role of Treatment Logs in Bleeding Disorder Self-Management.” Healthcare providers who complete the…
Real-world dosing and patient characteristics of rFVIIIFc in hemophilia A patients
Objective: To analyze real world rFVIIIFc patient characteristics and treatment interval patterns in patients with hemophilia A based on specialty pharmacy dispensing records. Methods: A retrospective…
Town Hall Webinar - Pain Management: Coping During COVID-19
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Hemophilia History the Focus of New Partners Modules
The Partners in Bleeding Disorders Education Program has announced the launch of two new online learning modules that speak to the history of hemophilia, with particular focus on early understanding of the disease and the evolution of treatment and…

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