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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
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Health and Wellness Update from Dr. Valentino
I know many of you are overwhelmed with often-conflicting information on the COVID-19 virus. As a doctor and researcher, the health of the bleeding disorder community is my highest priority. Every Friday, I will be sending you vetted, trusted…
Efficacy of a Recombinant Factor IX Investigational Product, IB1001 (trenonacog alfa) for Perioperative Management in Hemophilia B Patients
Objective: To evaluate efficacy of IB1001 for perioperative management of bleeding under surgical circumstances in hemophilia B patients. Methods: The efficacy of IB1001 for perioperative management has…
Coverage Concerns and Unanswered Questions: We Get It
As a community, we know how important it is for people with bleeding disorders to maintain comprehensive health insurance. Amid the uncertainty of the ongoing coronavirus emergency, we want to remind you that insurance options exist even for…
Three Concizumab Trials Halted by Novo Nordisk
Novo Nordisk recently announced that they have “paused” three clinical trials for their investigational subcutaneous therapy concizumab. The therapy is developed using a synthetically produced (recombinant) antibody derived from a single cell clone…
Updates on Product Availability During COVID-19 Outbreak
NHF will be posting all communications from pharmaceutical companies regarding any potential affects that the COVID-19 pandemic could have on the manufacture and distribution of their products. If you have any questions about your particular product…
Statement from Len Valentino on COVID-19
As we continue to monitor the COVID-19 outbreak in the US and around the world, we understand the uncertainty that it may bring to our community. I know that first and foremost on your mind is the health and safety of you, your family, and others…
2020 NYC Half Marathon Cancelled
The 2020 United Airlines Half Marathon has been cancelled due to concerns over transmission of COVID-19. The NY Road Runners Association, which organizes the yearly event, issued this statement. “At New York Road Runners, the welfare of our…
NHF Office Response to COVID-19
Due to the recommendations of local government, in response to the COVID-19 virus and concerns with the use of mass transit, NHF's New York City staff will be working remotely until further notice. All NHF employees will continue to be available via…
Takeda Responds to HFA-NHF Letter on VONVENDI Recall
As previously reported by HFA and NHF, Takeda announced the recall of two lots of VONVENDI von Willebrand factor (recombinant) 1,300 I.U. vials on February 25, 2020. HFA and NHF recognize that recalls can be very unsettling for many in the bleeding…
NHF Letter to the Community on COVID-19
Our greatest asset at NHF is the community we serve, our family of staff and volunteers. We are aware of the general concerns in the community about the COVID-19 outbreak and how this may impact your decision to attend the educational conferences…

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