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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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Jeff Lynch
NBDF Supports WFH Statement on ISTH Hemophilia Treatment Guidelines
For Immediate Release CONTACT:  Kyla Clark National Bleeding Disorders Foundation 347-920-0047kclark@bleeding.org NATIONAL BLEEDING DISORDERS FOUNDATION STANDS IN SUPPORT OF WFH’S STATEMENT REGARDING…
First Sickle Cell Patient to Receive Gene Therapy Featured in NYT
Late in 2023 the U.S. Food and Drug Administration (FDA) approved a pair of new therapies that represented a significant scientific breakthrough in gene therapy to treat patients with sickle cell disease (SCD), a rare condition with historically few…
HANDI Highlights Mental Health Resources for Bleeding Disorders Community
May is Mental Health Awareness Month, and HANDI, in keeping with this theme, is excited to focus on resources that support mental well-being. This edition highlights this important topic from a variety of perspectives and through multiple formats,…
NBDF Celebrates HHS Final Rule Strengthening Protections Against Disability Discrimination
For Immediate Release CONTACT:  Kyla Clark National Bleeding Disorders Foundation 347-920-0047kclark@bleeding.org NBDF Celebrates HHS Final Rule Strengthening Protections Against Disability…
Empower Your Journey: Explore the Own Your Path and THRIVE Programs with NBDF's Education Department
 Speakers: Brendan Hayes, Heather Hicks, Lena Volland, Ryan Sarshuri Host: Fiona Robinson, Ph.D. Description: Register to join us for a free webinar and learn about a new dynamic NBDF…
FDA Approval Includes Full ALTUVIIIO™ Pediatric Trial Results
The U.S. Food and Drug Administration (FDA) has approved updated prescribing information for ALTUVIIIO™ (Sanofi) to include the full results of the phase 3 XTEND-Kids clinical trial.  ALTUVIIIO is a recombinant factor VIII…
Study Suggests Prophylaxis Can Mitigate Intracranial Hemorrhage Risk
Results of a new study published in the Journal of Blood Medicine (JBM), indicate that people with hemophilia A (HA) who have been on a prophylactic treatment regimen have a reduced risk for intracranial hemorrhage (ICH).  Often…
NBDF Releases Statement on UK Infected Blood Scandal
For Immediate Release CONTACT:  Kyla Clark National Bleeding Disorders Foundation 347-920-0047kclark@bleeding.org  NBDF Releases Statement on UK Infected Blood ScandalNBDF Stands…
Ray Stanhope

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