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Expert Review of Hematology Volume 16, 2023 - Issue sup1: The National Hemophilia Foundation’s State of the Science Research Summit: Building the foundation for a community-generated national blueprint for future research in inherited bleeding disorders
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Original Research

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders

Diane Nugenta Center for Inherited Blood Disorders, Orange, California, USA;b Pediatric Hematology Division, Department of Pediatrics, University of California at Irvine, Children's Hospital of Orange County, Irvine, California, USAView further author information
,
Suchitra S. Acharyac Hemostasis and Thrombosis Center, Northwell Health, New Hyde Park, New York, New York, USAView further author information
,
Kimberly J. Baumannd Center for Bleeding and Clotting Disorders, M Health Fairview, Minneapolis, Minnesota, USAView further author information
,
Camille Bedrosiane Ultragenyx Pharmaceutical IncNovato, California, USAView further author information
,
Rebecca Bialasf Plasminogen Deficiency Foundation, Durham, North Carolina, USAView further author information
,
Kai Browng National Hemophilia Foundation, New York, New York, USAView further author information
,
Deya Corzoh Sigilon Therapeutics, Cambridge, Massachusetts, USAView further author information
,
Amar Haidari Patient author, Lived Experience Expert, Dearborn, Michigan, USAView further author information
,
Catherine P. M. Haywardj Hamilton Regional Laboratory Medicine Program, Hamilton Health Sciences, Hamilton, Ontario, Canada;k Department of Pathology and Molecular Medicine, McMaster University, Hamilton, Ontario, CanadaORCID Iconhttps://orcid.org/0000-0002-2843-0817View further author information
ORCID Icon,
Peter Marksl Center for Biologics Evaluation and Research, U.S. Food and Drug Administration, Silver Spring, Maryland, USAView further author information
,
Marzia Menegattim Angelo Bianchi Bonomi Hemophilia and Thrombosis Center and Fondazione Luigi Villa, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, ItalyORCID Iconhttps://orcid.org/0000-0002-8527-7556View further author information
ORCID Icon,
Margaret E. Millern Oncology Support Service, Providence Alaska Medical Center, Anchorage, Alaska, USAView further author information
,
Kate Nammacherg National Hemophilia Foundation, New York, New York, USAView further author information
,
Roberta Pallam Angelo Bianchi Bonomi Hemophilia and Thrombosis Center and Fondazione Luigi Villa, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy;o Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Milan, ItalyORCID Iconhttps://orcid.org/0000-0001-8837-2367View further author information
ORCID Icon,
Skye Peltierd Center for Bleeding and Clotting Disorders, M Health Fairview, Minneapolis, Minnesota, USAORCID Iconhttps://orcid.org/0000-0002-1527-6638View further author information
ORCID Icon,
Rajiv K. Pruthip Comprehensive Hemophilia Center, Division of Hematology, Mayo Clinic, Rochester, Minnesota, USAORCID Iconhttps://orcid.org/0000-0002-6969-929XView further author information
ORCID Icon,
Michael Rechtq American Thrombosis and Hemostasis Network, Rochester, New York, USA;r The Hemophilia Center, Oregon Health & Science University, Portland, Oregon, USAORCID Iconhttps://orcid.org/0000-0002-2805-1016View further author information
ORCID Icon,
Benny Sørensens Hemab Therapeutics, Copenhagen, DenmarkView further author information
,
Michael Tarantinot Bleeding and Clotting Disorders Institute, Peoria, Illinois, USAView further author information
,
Alisa S. Wolbergu Department of Pathology and Laboratory Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA;v UNC Blood Research Center, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USAORCID Iconhttps://orcid.org/0000-0002-2845-2303View further author information
ORCID Icon &
Amy D. Shapirow Indiana Hemophilia and Thrombosis Center, Indianapolis, Indiana, USACorrespondence[email protected]
ORCID Iconhttps://orcid.org/0000-0003-2821-7159View further author information
ORCID Icon show all
Pages 55-70 | Received 14 Dec 2022, Accepted 30 Jan 2023, Published online: 15 Mar 2023

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