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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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NBDF’s Established Initiatives & Impact >

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State of the Science Research Summit
State of the Science Research Summit Speaker: Leonard A Valentino, MD; Michael Retch, MD Did you miss the June 23rd Wednesday Webinar on the State of the Science Research Summit? Listen to NHF President and CEO Leonard A…
VWD Guidelines and Shared Decision-making
VWD Guidelines and Shared Decision-making Speaker: Nathan Connell, MD, MPH; Paula James, MD; Jean Grow, PhD Did you miss the June 30th Wednesday Webinar series in the new VWD Guidelines and Shared Decision Making? If so…
What is the Bleeding Disorders Research Collaborative?
The inherited bleeding disorders community has seen significant advancements in care, thanks to new therapeutics and technologies, and improved diagnostics. Yet there are still important and persistent gaps in care today, particularly for those with…
Our Journey Together
NBDF considers the BDRC as an opportunity to address gaps in knowledge that can improve the lives of people affected by inheritable bleeding disorders. We want to ensure that the lived experience drives and influences the research process with…
Rose Bender
NHF Marks the 40th Anniversary of the HIV Epidemic
FOR PUBLIC COMMENT - JUNE 3, 2021 This June marks a painful anniversary for the inheritable blood disorders community and the world. On June 5, 1981, the first cases of what would come to be known at HIV were reported by the…
Newsletter Archive
*/ Scroll to explore NBDF's email newsletter archives from newest to oldest. Want to receive e-news from NBDF? Click here to subscribe.  NBDF Health & Wellness eNewsletter - 11/26/21 - Life in the Time of COVID-19NBDF Health &…
NHF State of the Science Research Summit
  Review the State of the Science Research Summit Following the community listening sessions and working group efforts, individuals, families, and experts came together for the State of the Science Research Summit, on September 12-15,…
Five-year safety and efficacy of N9-GP (REBINYN®) in previously treated children with hemophilia B in the ongoing paradigm 5 trial
Objective: The ongoing pediatric phase 3 paradigm 5 trial is assessing N9-GP (nonacog beta pegol, REBINYN®) use for routine prophylaxis and treatment of breakthrough bleeds in previously treated children with hemophilia B (FIX ≤2…
The BDRC Structure and Research Priorities
Introducing the Bleeding Disorders Research Collaborative (formerly the NRB)The purpose of the BDRC is to actualize an integrated research network that can accelerate our learnings to dramatically improve the experience of living with bleeding…

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