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NHF Publications
 

The National Hemophilia Foundation's (NHF's) publications contain informative resources for people with bleeding disorders and their families. These publications will be of use to healthcare providers, educators, librarians and other healthcare organizations.

The publications available can be found within the following categories:
General Resources for Individuals with Bleeding Disorders and Their Families
Resources for Women with Bleeding Disorders
NHF National Prevention Program
Resources for Providers
HIV / AIDS and Hepatitis

Click here to access our Order Form of currently available NHF publications. If you have questions about these publications, would like to place an order, or would like help finding additional materials not listed here, please contact HANDI, NHF’s information service, via e-mail at handi@hemophilia.org or via phone at 800-42-HANDI.  Be sure to include your name, mailing address, and phone number in any e-mail requests.

General Resources for Individuals with Bleeding Disorders and Their Families  (^)

Caring for Your Child with Hemophilia (2001)
(Como Cuidar de su Hijo con Hemofilia)

This publication provides parents of children newly diagnosed with hemophilia answers to their basic questions. Many aspects are covered such as inheritance, current treatments, as well as sports, and insurance issues. The symptoms of different types of bleeding episodes are discussed explaining the severity of particular injuries. Provided are tips for babies including immunization, nutrition, and dental care. Also discussed are the social and emotional issues children with hemophilia experience through the developmental process. (33 pages)

The Child with a Bleeding Disorder: First Aid for School Personnel (2001)
(El Nino que Padece de un Desordes de Sangrado: Primeros Auxilios Para el Personal de la Escuela) - tambien esta disponible en espanol

A new 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.

The Child with a Bleeding Disorder: Guidelines for Finding Childcare (2000)
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. (8 pages)

Facts About Inhibitors (2009)

This brochure provides an explanation of inhibitors, one of the major complications facing certain individuals with hemophilia and their families. Facts About Inhibitors also describes testing, treatment options and the significant physical and psychosocial challenges associated with this difficult complication. (13 pages)

Hemophilia Treatment Center Directory
Updated biannually by the Centers for Disease Control and Prevention, this guide provides primary contact information for HTCs in the US. The HTC directory will be useful to both consumers and providers.

Home Infusion Magnet
(Iman por Inyeccion en Casa)

This magnet (tambien esta disponible en espanol) provides a reminder of safe infusion practices.

Inheritance of Hemophilia (1998)
This booklet provides a sophisticated explanation of the genetic transmission of hemophilia. It also describes tests used to find out if the hemophilia gene is present, particularly in women who may carry the gene but show no signs of excessive bleeding. Reproductive choices for men and women with the hemophilia gene are reviewed. (15 pages)

Inherited Bleeding Disorders and Child Abuse Investigations (1998)
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. (6 pages)

NHF Consumer Bill Of Rights and Responsibilities for Healthcare Services (1995)
This brochure sets out 15 basic medical rights for all people with bleeding disorders. (3 pages)

Nosebleeds (2007)
(Hemorragias Nasales) - tambien esta disponible en espanol
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. (7 pages)

Playing it Safe: Bleeding Disorders, Sports and Exercise
(Jugando a lo Seguro) - tambien esta disponible en espanol

This booklet presents valuable information for the person with a bleeding disorder or his/her parents to consider before participating in sports activities. Topics covered include conditioning, stretching and flexibility, weight training and cardiovascular exercise. A safety rating chart with many sports and exercise regimens is provided as well.

What is Mild Hemophilia? (2008)

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.(6 pages)

 
Resources for Providers                                                                                                  (^)

NHF Outreach Guide
This outreach guide was developed to assist those persons who will be identifying and reaching the unserved and underserved people with bleeding disorders–particularly women, rural residents, youth, and adolescents. The guide seeks to foster linkage between these individuals and hemophilia treatment centers, chapters, and other organizations to reduce the complications of bleeding disorders and enhance quality of life.

The Nurses' Guide to Bleeding Disorders (2002)
The Nurses' Guide to Bleeding Disorders is intended to provide comprehensive information as well as practical ideas to assist nurses in caring for patients and families affected by bleeding disorders. Developed by members of NHF’s Nursing Working Group, the guide is an excellent primer for nurses new to the field of coagulation and a resource for more experienced nurses. The guide includes chapters on the following subjects: hemophilia and von Willebrand disease therapy, women and bleeding disorders, rare coagulopathies, prophylaxis, venous access devices, emergency room care, orthopedic complications, pain, hepatitis and HIV/AIDS, inhibitors to factor VIII and factor IX, the student with a bleeding disorder, insurance coverage, and wellness. A current major revision is being undertaken by Carolyn Francis, the members of the Nursing Working Group, and the original authors.

Revision Available Online

 
HIV / AIDS and Hepatitis                                                                                                 (^)

My Parents Have HIV/AIDS (1994)
by Stephanie and Kathy Gerus A very personal account (also available in Spanish) of hemophilia and HIV/AIDS written and illustrated by a young girl for other young people. It explains HIV and AIDS in very easy-to-understand terms. This is not only a valuable book for schools but also an important story for parents and children to read together. (31 pages)

Song of Superman Video and Workbook (1993)
Jointly produced by NHF and the Canadian Hemophilia Society, a video and workbook designed to help young people with bleeding disorders come to terms with their HIV status, sexuality, and living with HIV. The video explores issues of disclosure in relationships and safer sex through dramatic scenes and frank testimonials by young people living with hemophilia and/or HIV. The companion workbook contains group exercises that follow each of the main topics of the video and serves as a bridge to discussion. (49 pages)

 
To access information and resources for women with blood disorders, please visit out Victory for Women section.