![The National Hemophilia Foundation’s State of the Science Research Summit: the foundation of a national research blueprint for inherited bleeding disorders](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
The National Hemophilia Foundation’s State of the Science Research Summit: the foundation of a national research blueprint for inherited bleeding disorders
![Lived experience experts: a name created by us for us](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Lived experience experts: a name created by us for us
![Soliciting international perspectives on an American national research agenda for inherited bleeding disorders](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Soliciting international perspectives on an American national research agenda for inherited bleeding disorders
![Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia
![Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for mucocutaneous bleeding disorders](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for mucocutaneous bleeding disorders
![Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders
![Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research to advance the health of people with inherited bleeding disorders with the potential to menstruate](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research to advance the health of people with inherited bleeding disorders with the potential to menstruate
![Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science
![Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: facilitating research through infrastructure, workforce, resources and funding](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: facilitating research through infrastructure, workforce, resources and funding
![The National Hemophilia Foundation State of the Science Research Summit initiative: executive summary](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
The National Hemophilia Foundation State of the Science Research Summit initiative: executive summary
![National Hemophilia Foundation Convenes Diverse Community Voices to Define an Actionable National Research Blueprint for Inherited Bleeding Disorders](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
National Hemophilia Foundation Convenes Diverse Community Voices to Define an Actionable National Research Blueprint for Inherited Bleeding Disorders
![National Hemophilia Foundation Enlists Diverse Patient Voices to Inform a National Research Blueprint for Inherited Bleeding Disorders](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
National Hemophilia Foundation Enlists Diverse Patient Voices to Inform a National Research Blueprint for Inherited Bleeding Disorders
![Bleeding Disorder Data Registry Reveals Racial/Ethnic Disparities That Could Significantly Impact Patient Journey](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Bleeding Disorder Data Registry Reveals Racial/Ethnic Disparities That Could Significantly Impact Patient Journey
![Poor outcomes in people with hemophilia: Physician and subject matter expert perspectives](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Poor outcomes in people with hemophilia: Physician and subject matter expert perspectives
![Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders](/sites/default/files/styles/research_image/public/image/NHF-Icon.jpg?itok=zaM4rnCk)
Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders
Rare, chronic diseases such as hemophilia and other congenital coagulation disorders require coordinated delivery of services for optimal outcomes. Hemophilia Treatment Centers (HTCs) are specialized, multidisciplinary healthcare centers providing team-based care to meet the physical, psychosocial, and emotional needs of people with hemophilia (PWH) and may serve as a model for other rare coagulation disorders. Health-care purchasers, as well as the general medical community, may not appreciate the breadth and quality of services provided by HTCs. They exemplify the acculturalization and actualization of integrated care by providing comprehensive diagnostic and treatment services that reduce morbidity, mortality, avoidable emergency room visits, hospitalizations, and overall costs while promoting a longer lifespan and improved patient functioning and outcomes.
This is accomplished by a team-based approach relying upon a shared decision-making model to effectively prevent complications and manage symptoms in PWH, who are dependent on high-cost treatments. This article provides a concise yet comprehensive description of the core components of an HTC and the regional and national networks in the United States, which together achieve their incomparable value for all stakeholders.
![Preferences of people with hemophilia A and B for treatments including gene therapies in the US: A discrete choice experiment](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Preferences of people with hemophilia A and B for treatments including gene therapies in the US: A discrete choice experiment
![The Relationship Between Self-Reported Physical Activity, Treatment Regimen, Mental Health and Pain In Persons with Hemophilia](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
The Relationship Between Self-Reported Physical Activity, Treatment Regimen, Mental Health and Pain In Persons with Hemophilia
The relationship between self-reported physical activity, treatment regimen, mental health and pain in persons with hemophilia enrolled in NHF's community voices in research.(2021). ABSTRACTS. Haemophilia, 27: 3-20. https://doi.org/10.1111/hae.14385
![Telegenetic Counseling for Females MLOF Participants](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Telegenetic Counseling for Females MLOF Participants
![Passive Infusion Logging System (PILS): A Pilot](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Passive Infusion Logging System (PILS): A Pilot
![Community Voices in Research (CVR): A Patient-Centric Approach Moving the Future of Inherited Bleeding Disorders Forward](/sites/default/files/styles/research_image/public/image/Drop-02.png?itok=m4JRjb9B)
Community Voices in Research (CVR): A Patient-Centric Approach Moving the Future of Inherited Bleeding Disorders Forward
(2021), Abstract. Res Pract Thromb Haemost, 5: e12554. https://doi.org/10.1002/rth2.12554