Who We Are

In order to more firmly identify the Regional HTC infrastructure and its leadership, complement the networks created by the federal Health Resources and Services Administration (HRSA) and Centers for Disease Control and Prevention (CDC) grants, and to endure if grant opportunities cease, the USHTCN aims to work collaboratively to meet needs of the HTCs. In 2020, while remaining focused on initial aims and in response to new, emergent concerns including COVID-19, multiple natural disasters, product recalls, and the quickly-evolving landscape of treatments for people with bleeding and clotting disorders, the USHTCN efforts regained momentum.

Presently, the individuals comprising the USHTCN leadership are the same as those who represent the US HTC regions for the HRSA and CDC grants. They are uniquely responsible for designating HTCs, ensuring that HTCs fulfill federal grant requirements, promoting equitable access to care and surveillance, and sustainability planning for the regional networks.

The USHTCN establishes representation for HTCs outside of specific requirements of federal grants and partner organizations. Topics of focus for this group include:

• increasing harmonization of team building and care standards and establishing “Best Practices” across HTCs
• amplifying the voice of individual HTCs
• maintaining infrastructure to support networking of HTCs
• creating an identifiable entity for stakeholders and others who want to seek HTC input, get HTC feedback or want to propose a collaborative project
• promoting and disseminating research opportunities, diagnostic and therapeutic guidelines, and advocacy needs for patient access to care and HTC sustainability

The USHTCN is focused on improving access to coordinated, evidence-based care for individuals with bleeding and clotting disorders and their families through outreach and collaboration with underserved communities, patient and family education, and continuous quality improvement. In collaboration with HRSA, CDC and the National Hemophilia Program Coordinating Center (NHPCC), the USHTCN works to track and analyze national, regional, and HTC-level data to assess and monitor patient outcomes and areas for improvement including improving access to equitable care for individuals with bleeding or clotting disorders.

Currently the HTCs in the USHTCN receive Federal support through the Regional Hemophilia Network Grant and, as a result, are required to receive oversight from their regional core center, adhere to established best practices for disease management and provide care per evidence-informed treatment guidelines. All HTCs within the USHTCN follow Standards and Criteria for Care as outlined within the National Hemophilia Foundation’s Medical and Scientific Advisory Board Document #269. Additionally, HTCs participate in Healthy People 2030 – a US Department of Health and Human Services program that sets data-driven national objectives to improve health and well-being, including preventing illness and disability related to blood disorders. Reducing joint bleeding in people with hemophilia and improving time to diagnosis for people with von Willebrand disease are national objectives supported at all HTCs (www.health.gov/healthypeople).