Skip to main content
 
Paid Advertisement.
 NBDF does not endorse products or manufacturers.
Leaderboard Ad

Top area menu

  • News
  • Events
Home
menu burger
  • Give
  • Subscribe

Main navigation

  • Who We Are
  • Bleeding Disorders A-Z
  • Educational Programs
  • Advocacy
  • Research
  • Healthcare Professionals
  • Community Resources
  • Make a Difference
  • 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
  • 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
  • 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
  • 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 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
  • 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
  • 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
  • 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
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
  • Give
  • Subscribe
NBDF’s Established Initiatives & Impact >

Search

  1. Home
  2. Search
FDA Accepts Priority Review BLA for Hemophilia B Gene Therapy
The U.S. Food and Drug Administration (FDA) has accepted CSL Behring’s Biologics License Application (BLA) for priority review of etranacogene dezaparvovec, an investigational gene therapy for hemophilia B. Etranacogene dezaparvovec, also known…
Telegenetic Counseling for Females MLOF Participants
Passive Infusion Logging System (PILS): A Pilot
Community Voices in Research (CVR): A Patient-Centric Approach Moving the Future of Inherited Bleeding Disorders Forward
Individuals and families in the bleeding disorders community and those who experience other chronic rare conditions have not typically been engaged in patient reported registries or in clinical studies during the initial study design phase. The more…
The Relationship Between Self-Reported Physical Activity, Treatment Regimen, Mental Health and Pain In Persons with Hemophilia
The objective of this study was to assess the relationship between self-reported physical activity, treatment regimen, mental health, and pain in persons with hemophilia (PWH) enrolled in CVR. Despite education to the contrary, PWSH continue to…
NHF Wants Your Opinion
NHF wants to know what is working well, and what isn't! How can we better serve you as an organization and community leader? In order to become your go-to trusted resource for information on bleeding and blood disorders, NHF is asking for your…
Honoring the Legacy of Dr. Charles Drew
June 3 is the birth date of the late physician and researcher, Dr. Charles Drew. Dr. Drew is remembered for his legacy in creating valuable techniques and processes in blood storage and blood transfusion that are still used today. He is also…
BioMarin Announces Delay in Application to FDA
BioMarin recently announced that their planned timeline for the resubmission of a Biologics License Application to the U.S. Food and Drug Administration (FDA) for valoctocogene roxaparvovec, also known as Roctavian, has been pushed back to the end…
Double-stranded Adeno-associated Virus (dsAAV) Vectors to Improve Efficacy and to Evaluate Safety of Factor IX Gene Therapy
Paul Monahan is Translational and Clinical Development Lead for Hematology Gene Therapy at Spark Therapeutics. Prior to 2015, Dr. Monahan was Professor of Pediatrics, Hematology/Oncology at the University of North Carolina at Chapel Hill, where he…
NHF Survey Closes
NHF wants to be the leading source for bleeding/blood disorders, and we need your help to reach this goal! Your feedback is valuable and welcome. Please follow this link to take the short and anonymous survey. Take the Survey

Pagination

  • First page
  • Previous page
  • …
  • Page 160
  • Page 161
  • Page 162
  • Page 163
  • Current page 164
  • Page 165
  • Page 166
  • Page 167
  • Page 168
  • …
  • Next page
  • Last page

Contact us

1230 Avenue of the Americas 16th Floor, New York, NY 10020, United States
212.328.3700
212.328.3777

About

  • What We Do
  • Our Team
  • Careers
  • Request Information

Resources

  • Chapters
  • HTC Search
  • Clinical Trials
  • Scholarships
  • Camp Near You
  • CVR

Legal

  • Privacy Policy
  • Medical Disclaimer
  • Gift Acceptance
  • Conflict of Interest
  • Whistleblower
  • Translation Policy

Give

  • Donate
  • Fundraise
  • Other Ways to Give
  • Why Give?

NBDF White

Candid Seal Platinum Charity Navigator

©  National Bleeding Disorders Foundation
All rights reserved.