NHF has numerous publications, brochures and tools available here for download or if available print versions can be mailed to you by contacting handi@hemophilia.org. These engaging resources span across different bleeding disorders and can you used for patients and families, or sharing with schools, workplaces and extended family members and friends.

NHF encourages redistribution of its publications for educational purposes by other nonprofit bleeding disorders organizations. NHF produced materials, either printed publications or website content, cannot be translated or reproduced in whole or in part without prior written permission from NHF.

 

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Guidelines for Growing: An action plan for parents of children with bleeding disorders ( Ages 5-8)
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.
Guidelines for Growing: An action plan for parents of children with bleeding disorders (Ages 5-8)
Guidelines for Growing: An action plan for teens with bleeding disorders (Ages 16-18)
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.
Guidelines for Growing: An action plan for parents of children with bleeding disorders (Ages 16-18)
Guidelines for Growing: An action plan for teens with bleeding disorders ( Ages 13-15)
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.
Guidelines for Growing: An action plan for parents of children with bleeding disorders (Ages 13-15)
Let's Talk Puberty: A Guide for Girls with Bleeding Disorders
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.
Let's Talk Puberty: A Guide for Girls with Bleeding Disorders – Tips for Parents & Caregivers
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.
Time to Talk Puberty: A Guide for Girls with Bleeding Disorders
von Willebrand Disease: Piecing together the VWD Puzzle
To help individuals and families as they learn more about living with VWD.
von Willebrand Disease: Piecing Together the VWD Puzzle
VWD Brochure
This tri-fold is a basics to VWD (very popular).
Introduction to von Willebrand Disease
BYK Doctor Visit Preparation
Check list of questions to help consumers with a doctor visit.
Better You Know: Doctor Visit Preparation
BYK Healthcare Diary
Diary list of "tracking" questions for consumer to be mindful of prior (month or two) before a doctor visit.
Better You Know: Healthcare Diary
BYK Lab Test Log
This form tracks what tests were ordered by a healthcare provider, when tests were given, and the test results.
Better You Know: Lab Test Log
VWD Youth Activity Book
Activity book for children with VWD.
von Willebrand Disease Youth Activity Book
BYK Menstrual Chart and Scoring System
This form tracks the menstrual flow according to saturation with tampons or pads.
Better You Know: Menstrual Chart Scoring System
BYK What You Should Know
This brochure is a guide to lab tests, screening tools, and health exams. A comprehensive glossary of terminology is included.
Better You Know: What You Should Know
BYK Teen Girls Brochure
This brochure covers basic topics of puberty, changes, periods, bleeding disorders and a glossary of terminology.
Better You Know: Teen Girls Brochure - English
BYK Provider Information
This brochure provides information on the signs and the steps to take toward diagnosis for primary care physicians.
Better You Know: Provider Information
BYK Provider Information OB/GYN
This brochure provides information on the signs and the steps to take toward diagnosis for OB/GYNs.
Better You Know: Provider Information for OB/GYNs
Guidelines for Growing: An action plan for parents of children with bleeding disorders (Ages Birth-4)
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.
Guidelines for Growing: An action plan for parents of children with bleeding disorders (Birth-4)
Guidelines for Growing: An action plan for parents of children with bleeding disorders ( Ages 9-12)
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.
Guidelines for Growing: An action plan for parents of children with bleeding disorders (9-12)
The Child with a Bleeding Disorder: Guidelines for Finding Childcare
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.
The Child with a Bleeding Disorder: First Aid for School Personnel
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).
The Child with a Bleeding Disorder: First Aid for School Personnel (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).
Inherited Bleeding Disorders and Child Abuse Investigations
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.
What is Mild Hemophilia?
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.
Nosebleeds
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.
Nosebleeds (Spanish)
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.
Living With Inhibitors
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.
La Vida con un Inhibidor
Su guía para controlar la hemofi lia con inhibidores
La Vida con un Inhibidor
Playing it Safe: Bleeding Disorders, Sports and Exercise
This comprehensive educational booklet describes the importance of physical activity for joint health and overall wellness in people living with bleeding disorders.It provides an overview of various sports and activities for all stages of life and addresses how to participate in physical activity safely.
Playing it Safe: Bleeding Disorders, Sports and Exercise (Spanish)
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.
Facts About Inhibitors
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.
Información sobre Inhibidores
Conozca los conceptos básicos y sométase a una revisión médica
Información sobre Inhibidores
Role of New Prolonged Half-Life Clotting Factors in Hemophilia
“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.
Super Seven - A Story for Rares
Twelve‐year‐old Tanner has a rare bleeding disorder and sometimes feels like no one understands what he’s going through. Does this sound like you? We’ve created Super Seven: A Story for Rares, a book about a kid with a rare bleeding disorder for children with very rare bleeding disorders. Super Seven is targeted to middle school readers, kids roughly between the ages of 8 and 12, but everyone is welcome to read the book.
Super Seven - Discussion Guide
This discussion guide is for parents and caregivers to help generate conversation about some of the themes of the book Super Seven, including sports, disclosing your bleeding disorder, and school issues. We encourage parents and caregivers to read both the book and the guide before having a discussion.
Factor VII (F7) Booklet
Factor VII is an ultra-rare bleeding disorder. This booklet was created to help individuals learn about how Factor VII (F7) Deficiency is diagnosed and provide information about symptoms, treatment options, and resources. This publication was developed through the support of NHF’s 2021 Community Education Program sponsors: BioMarin, Genentech, Hemophilia Alliance, Sangamo, Sanofi Genzyme, and Takeda.
Factor VII Deficiency Booklet
Factor X (F10) Booklet
Factor X is an ultra-rare bleeding disorder. This booklet was created to help individuals learn about how Factor X (F10) Deficiency is diagnosed and provide information about symptoms, treatment options, and resources. This publication was developed through the support of NHF’s 2021 Community Education Program sponsors: BioMarin, Genentech, Hemophilia Alliance, Sangamo, Sanofi Genzyme, and Takeda.
Factor X Deficiency
Factor XIII (F13) Booklet
Factor XIII is an ultra-rare bleeding disorder. This booklet was created to help individuals learn about how Factor XIII (F13) Deficiency is diagnosed and provide information about symptoms, treatment options, and resources. This publication was developed through the support of NHF’s 2021 Community Education Program sponsors: BioMarin, Genentech, Hemophilia Alliance, Sangamo, Sanofi Genzyme, and Takeda.
Factor XIII Deficiency
Glanzmann’s Thrombasthenia (GT) Booklet
Glanzmann’s Thrombasthenia an ultra-rare bleeding disorder. This booklet was created to help individuals learn about how Glanzmann’s Thrombasthenia (GT) is diagnosed and provide information about symptoms, treatment options, and resources. This publication was developed through the support of NHF’s 2021 Community Education Program sponsors: BioMarin, Genentech, Hemophilia Alliance, Sangamo, Sanofi Genzyme, and Takeda.
Glanzmann’s Thrombasthenia (GT) Booklet
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