biostudies-literatureValentino LANational Heart, Lung, and Blood InstituteNHLBI NIH HHSNational Hemophilia Foundation760-768https://www.ebi.ac.uk/biostudies/studies/S-EPMC9546016biostudies-literatureUnknown28(5)<h4>Introduction</h4>Decades of inherited bleeding disorders (BD) research transformed severe haemophilia from a childhood killer to a disorder managed across a full lifespan for many in economically developed countries. Health equity, a life unimpaired by disease complications, however, remains unimaginable for most people with an inherited BD (PWIBD).<h4>Aim</h4>The National Hemophilia Foundation (NHF) and American Thrombosis and Hemostasis Network (ATHN) undertook the development of a community-driven United States (US) National Blueprint for Inherited Bleeding Disorders Research to transform the experience of all PWIBD and those who care for them.<h4>Methods</h4>Extensive community consultations were conducted to identify the issues most important to PWIBD and those who love and care fHaemophilia : the official journal of the World Federation of HemophiliaBuilding the blueprint: Formulating a community-generated national plan for future research in inherited bleeding disorders.PMC9546016R13HL158209Witkop MLRecht MValentino LASantaella MEDiMichele DfalseBuilding the blueprint: Formulating a community-generated national plan for future research in inherited bleeding disorders.<h4>Introduction</h4>Decades of inherited bleeding disorders (BD) research transformed severe haemophilia from a childhood killer to a disorder managed across a full lifespan for many in economically developed countries. Health equity, a life unimpaired by disease complications, however, remains unimaginable for most people with an inherited BD (PWIBD).<h4>Aim</h4>The National Hemophilia Foundation (NHF) and American Thrombosis and Hemostasis Network (ATHN) undertook the development of a community-driven United States (US) National Blueprint for Inherited Bleeding Disorders Research to transform the experience of all PWIBD and those who care for them.<h4>Methods</h4>Extensive community consultations were conducted to identify the issues most important to PWIBD and those who love and care f2022-01-01T00:00:00Z2022 Sep2025-04-22T12:08:49.826Z2025-04-06T00:12:41.072ZS-EPMC95460163570044110.1111/hae.14588