Read Our Publications

A component of the National Hemophilia Foundation’s (NHF’s) Steps for Living Program, funded in part by the Centers for Disease Control and Prevention, is Guidelines for Growing, a series of age-specific brochures (targeting ages 0-4, 5-8, 9-12, 13-15, and 16-18) adapted from the NHF’s Medical and Scientific Advisory Council (MASAC). Each brochure focuses on social and developmental milestones specific to the general age range of a child or young person with a bleeding disorder. This resource is designed to be used in conjunction with the HTC provider team to guide the parent or young person through transitional periods.

A component of the National Hemophilia Foundation’s (NHF’s) Steps for Living Program, funded in part by the Centers for Disease Control and Prevention, is Guidelines for Growing, a series of age-specific brochures (targeting ages 0-4, 5-8, 9-12, 13-15, and 16-18) adapted from the NHF’s Medical and Scientific Advisory Council (MASAC). Each brochure focuses on social and developmental milestones specific to the general age range of a child or young person with a bleeding disorder. This resource is designed to be used in conjunction with the HTC provider team to guide the parent or young person through transitional periods.

A component of the National Hemophilia Foundation’s (NHF’s) Steps for Living Program, funded in part by the Centers for Disease Control and Prevention, is Guidelines for Growing, a series of age-specific brochures (targeting ages 0-4, 5-8, 9-12, 13-15, and 16-18) adapted from the NHF’s Medical and Scientific Advisory Council (MASAC). Each brochure focuses on social and developmental milestones specific to the general age range of a child or young person with a bleeding disorder. This resource is designed to be used in conjunction with the HTC provider team to guide the parent or young person through transitional periods.

This book discusses the puberty experience for girls with bleeding disorders ages 9-14 in a approachable and engaging format. Topics include, ‘what is puberty’, a basic overview on the various bleeding disorders, the physical and emotional aspects of puberty, and how to have conversations with friends and loved ones.

This companion piece to Time to Talk Puberty discusses tips for parents and caregivers for discussing puberty with young person in their life including conversation pointers, and questions to ask.

To help individuals and families as they learn more about living with VWD.

This tri-fold is a basics to VWD (very popular).

Check list of questions to help consumers with a doctor visit.

Diary list of "tracking" questions for consumer to be mindful of prior (month or two) before a doctor visit.

This form tracks what tests were ordered by a healthcare provider, when tests were given, and the test results.

Activity book for children with VWD.

This form tracks the menstrual flow according to saturation with tampons or pads.

This brochure is a guide to lab tests, screening tools, and health exams. A comprehensive glossary of terminology is included.

This brochure covers basic topics of puberty, changes, periods, bleeding disorders and a glossary of terminology.

This brochure provides information on the signs and the steps to take toward diagnosis for primary care physicians.

This brochure provides information on the signs and the steps to take toward diagnosis for OB/GYNs.

A component of the National Hemophilia Foundation’s (NHF’s) Steps for Living Program, funded in part by the Centers for Disease Control and Prevention, is Guidelines for Growing, a series of age-specific brochures (targeting ages 0-4, 5-8, 9-12, 13-15, and 16-18) adapted from the NHF’s Medical and Scientific Advisory Council (MASAC). Each brochure focuses on social and developmental milestones specific to the general age range of a child or young person with a bleeding disorder. This resource is designed to be used in conjunction with the HTC provider team to guide the parent or young person through transitional periods.

A component of the National Hemophilia Foundation’s (NHF’s) Steps for Living Program, funded in part by the Centers for Disease Control and Prevention, is Guidelines for Growing, a series of age-specific brochures (targeting ages 0-4, 5-8, 9-12, 13-15, and 16-18) adapted from the NHF’s Medical and Scientific Advisory Council (MASAC). Each brochure focuses on social and developmental milestones specific to the general age range of a child or young person with a bleeding disorder. This resource is designed to be used in conjunction with the HTC provider team to guide the parent or young person through transitional periods.

This publication provides a helpful guide for parents of children with bleeding disorders as they make choices about in-home care, cooperative childcare, center-based childcare and choosing a daycare center. Also included is a checklist of provider services and helpful hints for babysitters and other family caretakers.

A publication aimed at school nurses and teachers who have a student with a bleeding disorder. Descriptions of typical injuries and other incidences when bleeding occurs are discussed with proper steps that need to be followed as well as standard precautions and medications (bulk copies only available in Spanish).

A publication aimed at school nurses and teachers who have a student with a bleeding disorder. Descriptions of typical injuries and other incidences when bleeding occurs are discussed with proper steps that need to be followed as well as standard precautions and medications (bulk copies only available in Spanish).

A resource for emergency medical providers, healthcare workers, day care and school personnel, and child protection advocates, this booklet is intended to prevent unwarranted charges of abuse filed against parents or guardians of children with bleeding disorders. It explains hemophilia and von Willebrand disease and describes typical patterns of bruising or bleeding in children with the disorders.

Written in a straightforward and accessible style, this brochure is designed to help educate young readers about the mechanisms behind coagulation, prolonged bleeding and inheritance. It provides information on common myths, tips on prevention and basic treatment options.

Created in collaboration with NHF's Nursing Working Group and nurses from Canada, this publication describes the unique issues a person with a bleeding disorder faces with a nosebleed. Causes of nosebleeds, basic treatment, when to consult the bleeding disorder treatment center and prevention issues are discussed.

Created in collaboration with NHF's Nursing Working Group and nurses from Canada, this publication describes the unique issues a person with a bleeding disorder faces with a nosebleed. Causes of nosebleeds, basic treatment, when to consult the bleeding disorder treatment center and prevention issues are discussed.

NHF has developed this publication as part of a Cooperative Agreement with the Centers for Disease Control and Prevention for those who are newly diagnosed with an inhibitor. Find out how to treat bleeds when you have an inhibitor, options your healthcare provider may use for treatment of the inhibitor, and tips for handling the social, emotional and financial impact of inhibitors.

Este folleto educativo describe la importancia de la actividad física para la salud de las articulaciones y el bienestar general de las personas que viven con trastornos hemorrágicos. Proporciona una visión general de varios deportes y actividades para todas las etapas de la vida y aborda cómo participar en la actividad física con seguridad.

This is NHF’s latest resource covering the basics of inhibitors and why everyone with hemophilia should know about inhibitors. You will find information about what inhibitors are and how they form, who is most likely to develop an inhibitor and why getting a yearly test for inhibitors is so important. This brochure was developed as part of a Cooperative Agreement with the Centers for Disease Control and Prevention.

“Role of New Prolonged Half-Life Clotting Factors in Hemophilia,” which was developed independently by an NHF working group, includes a basic explanation of the differences between these newer products and traditional factor therapies, and the treatment choice implications for consumers. It also provides a description and helpful graphic representation of factor half-life.