Printed documents

Requests from inside Canada: You may order from the CHS Catalogue of Educational Material by telephone, mail, fax or e-mail. Please indicate the title(s) and the number of copies required.

Tel.: 514-848-0503
Toll-free: 1-800-668-2686
Fax: 514-848-9661

Canadian Hemophilia Society
400-1255 University Street
Montreal, Quebec  H3B 3B6
chs@hemophilia.ca

Requests from outside Canada: Much of the educational material produced by the CHS is available for immediate download in PDF format. When a document is available in PDF format the CHS will not ship a paper copy outside Canada. The CHS will provide single copies of material not available in PDF format when supplies are sufficient. Please contact the National Office of the Canadian Hemophilia Society for more information.

The World Federation of Hemophilia and many of its National Member Organizations publish excellent educational material. Visit www.wfh.org

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Acquired Hemophilia
A general information booklet for patients, families and healthcare providers about acquired forms of hemophilia. Developed and published by the Canadian Association of Nurses in Hemophilia Care (CANHC).

All About Carriers
A comprehensive guide for carriers of hemophilia A or B. Developed and published by the Canadian Hemophilia Society. Spiral bound. PDF

All About Hemophilia: A Guide for Families - Second Edition
A comprehensive resource for families raising a child with hemophilia. First developed and published by the Canadian Hemophilia Society in 2001. For the second edition, the original chapters have been thoroughly revised and updated and four new chapters have been added covering the topics of prophylaxis, symptomatic carriers, sports and physical activities and transition to adult care. Available through the Canadian hemophilia treatment centres.

Preface

Chapter 1  -  An Introduction to Hemophilia

Chapter 2  -  How a Child Gets Hemophilia

Chapter 3  -  Comprehensive Care for Hemophilia

Chapter 4  -  Management of Bleeds

Chapter 5  -  Clotting Factor Therapy

Chapter 6  -  The Role of Prophylaxis

Chapter 7  -  Home Infusion

Chapter 8  -  Complications of Hemophilia

Chapter 9  -  Mild and Moderate Hemophilia

Chapter 10  -  Growing with Hemophilia

Chapter 11  -  Staying Healthy

Chapter 12  -  Physical Activity, Exercise and Sports

Chapter 13  -  Transitions Toward Independence

Chapter 14  -  Symptomatic Carriers of Hemophilia

Chapter 15  -  Family Perspectives

Chapter 16  -  The Future of Hemophilia Care

Chapter 17  -  For More Information

Glossary


All About Inhibitors
A comprehensive guide about inhibitors for affected individuals and their families. Developed and published by the Canadian Hemophilia Society. Spiral bound. PDF

All About Me
Using a collaborative approach, the Atlantic Hemophilia Nurses group, a family and a very talented artist created a storybook for children with bleeding disorders. All About Me is designed to provide young school-age children with bleeding disorders the opportunity to share information about his or her medical condition with his/her classmates. PDF

All About von Willebrand Disease - Third Edition
A comprehensive guide for people with von Willebrand disease and their families. Developed and published by the Canadian Hemophilia Society and revised in 2011. PDF

Are You Ready For This? Taking Control of Your Own Future
A booklet designed for adolescents with hemophilia. Developed and published by the Eastern Canadian Hemophilia Nurses.

Bernard Soulier Syndrome – An Inherited Bleeding Disorder
The latest in the series on Rare Factor Deficiencies, this document is a general information booklet about the Bernard Soulier Syndrome for patients, families and healthcare providers. This booklet was developed by the Canadian Association of Nurses in Hemophilia Care (CANHC) and published by the Canadian Hemophilia Society. PDF

Bleed Stops Here (The)
An activity book for children with hemophilia and other inherited bleeding disorders. Developed by the Canadian Association of Nurses in Hemophilia Care (CANHC). Published by the Canadian Hemophilia Society. Spiral bound.

Challenges, Choices, Decisions: A guide on orthopedic surgery for people with hemophilia
This educational resource, has been developed as a guide to help hemophilia patients, not affected by an inhibitor, and their families understand what is involved in orthopedic surgery. It has been adapted from the original booklet published in 2008 for people with hemophilia and inhibitors. Available in PDF only.

Challenges, Choices, Decisions: A guide on orthopedic surgery for people with hemophilia and inhibitors
Until fairly recently, the risk of uncontrolled bleeding has prohibited most surgeries for patients with inhibitors. In the past decade, the availability of bypassing agents to manage bleeding during surgery has allowed procedures to be performed that previously were not considered possible. This new educational resource was developed as a guide to help hemophilia patients and their families understand what is involved in orthopedic surgery in the presence of inhibitors. PDF

Cyklokapron - A Guide for Patients and their Caregivers
A revised version of this simple brochure providing basic information on the uses and administration of this drug. Developed by the Canadian Association of Nurses in Hemophilia Care (CANHC). Published by the Canadian Hemophilia Society. PDF

Desmopressin - A Guide for Patients and Caregivers
A revised version of this simple brochure providing basic information on the uses and administration of DDAVP, Octostim, Octostim Spray and Stimate. Developed by the Canadian Association of Nurses in Hemophilia Care (CANHC). Published by the Canadian Hemophilia Society. PDF

Diane Dino's Dilemma: A Story of von Willebrand Disease
A storybook for children about von Willebrand Disease for ages 8 and up. Published by Aventis.

Disorders of Platelet Function
An Information Booklet for Patients,Families and Health Care Providers by Sara J. Israels, M.D. and Margaret L. Rand, Ph.D. PDF

Factor II Deficiency - An Inherited Bleeding Disorder
Factor II (FII) deficiency (also called hypoprothrombinemia or prothrombin deficiency) is a rare coagulation disorder. People affected by this deficiency and those close to them have very little written information about it. This booklet explains the causes of FII deficiency, its symptoms and available treatments.We hope that this information will help answer your questions. PDF

Factor V Deficiency - An Inherited Bleeding Disorder
Factor V deficiency, also called parahemophilia or Owren’s disease, is a very rare coagulation disorder. About one person in a million may be affected by this deficiency. Only 150 cases have been identified worldwide to date. PDF

Factor VII Deficiency - An Inherited Bleeding Disorder
A general information booklet about Factor VII Deficiency for patients, families and healthcare providers. Developed by the Canadian Association of Nurses in Hemophilia Care (CANHC). Published by the Canadian Hemophilia Society. PDF

Factor X Deficiency - An Inherited Bleeding Disorder
Factor X (pronounced 10) deficiency is a very rare blood coagulation disorder with complications that vary with the severity of the disorder. This deficiency is not well known, even among health professionals. People affected by this deficiency and those close to them have very little written information about it. This booklet therefore seeks to provide information for people trying to cope with this health problem. It explains the causes of the deficiency, symptoms, possible complications, and available treatments. PDF

Factor XI Deficiency – An Inherited Bleeding Disorder
The latest in our series on Factor Deficiencies, this document is a general information booklet about Factor XI Deficiency for patients, families and healthcare providers. Developed by the Canadian Association of Nurses in Hemophilia Care (CANHC). Published by the Canadian Hemophilia Society. PDF

Factor XII Deficiency – An Inherited Bleeding Disorder
Severe Factor XII deficiency is a very rare condition and is not well known, even among health professionals. The purpose of this booklet is to describe the deficiency with the hope that it will permit those affected to better understand the issues. PDF

Factor XIII Deficiency, an Inherited Bleeding Disorder
A general information booklet about Factor XIII Deficiency for patients, families and healthcare providers. Devloped by the Canadian Association of Nurses in Hemophilia Care (CANHC). Published by the Canadian Hemophilia Society. PDF

Family Planning Options: A Guide for Serodiscordant Couples
Many heterosexual couples are interested in having families, but for those couples who are serodiscordant (one partner is HIV and the other is HIV-), there are specific challenges to be faced. How do you have a family of your own without risking your health and the health of your family members? PDF

Fibrinogen or Factor I Deficiency – An Inherited Bleeding Disorder
Factor I (or fibrinogen) deficiency is a very rare inherited disorder with complications that vary with the severity of the disorder. It is not well known, even among health professionals. People affected by this disorder and those close to them have very little written information about it. This booklet therefore seeks to provide information for people trying to cope with this health problem. It explains the causes of the disorder and currently available treatments. PDF

Glanzmann Thrombasthenia - An Inherited Bleeding Disorder
A general information booklet about Glanzmann Thrombasthenia for patients, families and healthcare providers. Devloped by the Canadian Association of Nurses in Hemophilia Care (CANHC). Published by the Canadian Hemophilia Society. PDF

Go For It!
A guide on physical activity and sports for people with hemophilia and related bleeding disorders. Developed and published by the World Federation of Hemophilia. Spiral bound.

Guidelines Published by the Society of Obstetricians and Gynaecologists of Canada (SOGC)
SOGC Clinical Practice Guidelines on the Gynaecological and Obstetric Management of Women with Inherited Bleeding Disorders were published in the July, 2005 issue of the Journal of Obstetrics and Gynaecology Canada. Publication of these guidelines was one of the key recommendations arising from the 2003 1st Canadian State of the Art Conference on von Willebrand Disease organized by the Canadian Hemophilia Society. The CHS would like to acknowledge the authors: Drs. Christine Demers, Michèle David, Christine Derzko and Joanne Douglas whose expertise and efforts made this achievement possible. The guidelines are available in PDF format. This material is under copyright and is accessible for educational purposes only. It cannot be copied or reproduced without approval from The Society of Obstetricians and Gynaecologists of Canada. PDF

Hemophilia from Diagnosis to Homecare: Support for the Journey
Educational package designed to help new parents work through the challenges of raising a child with hemophilia. Also include two activity books for children. Developed by a hemophilia nurse coordinator, a mother of two boys with hemophilia, and several youth affected by bleeding disorders from Winnipeg, Manitoba. PDF

Hemophilia: What School Personnel Should Know
An information booklet about hemophilia for teachers and other school personnel. Developed by the Atlantic Hemophilia Nursing Group of the Canadian Association of Nurses in Hemophilia Care (CANHC).  PDF

Hepatitis C: An Information Booklet for People Infected With the Hepatitis C Virus, and Their Families and Friends
A comprehensive guide to the hepatitis C virus including: diagnosis, symptoms, treatment options, healthy lifestyle and psychosocial aspects of the disease.
Available in PDF only. PDF

Hepatitis C: Managing common symptoms and treatment side effects
Revised version. Contains 88 pages of practical tips for managing the symptoms of hepatitis C and the side effects of treatment.Based on medical research and the expertise of health care service providers and, most important, other people living with hepatitis C. Includes information on websites, organizations and referrals, financial assistance and much more.Published in partnership by CATIE and the Canadian Hemophilia Society.
AVAILABLE FROM CATIE’S ORDERING CENTRE:
www.catie.ca   orderingcentre@catie.ca  or at 1-800-263-1638
Available in PDF. PDF

Hepatitis C - Dealing with Discomforts
You may have discomforts – such as fatigue, nausea, vomiting, lack of appetite, diarrhea, taste changes – from the symptoms of hepatitis C or from the side effects of prescribed medicines. This flyer offers nutrition tips for people with hepatitis C. Available only in PDF.

Hepatitis C - Helping you feel your best
Hepatitis C harms your liver. Your liver plays many important roles. It deals with everything you eat and drink. A healthy lifestyle can help you feel your best and help your body cope with the hepatitis C virus. This flyer offers nutrition tips for people with hepatitis C. Available only in PDF.

Hepatitis C: Nutrition Care - Canadian Guidelines for Healthcare Providers
These guidelines are designed to serve as a general framework to assist decision making for nutritional management of patients infected with the hepatitis C virus and are based on the best information available at the time of publication. Available only in PDF.

Home Treatment Guide: for people with bleeding disorders - 2nd Edition
This Home Treatment Guide was developed by hemophilia nurses working with patient and families affected by hemophilia. The guidebook is designed to assist patients in the safe home treatment of bleeding disorders by providing basic information in an easy- to-use format. PDF

Information Booklet on Mild Hemophilia
Mild hemophilia can be very serious and even life-threatening if injuries or bleeds are not treated promptly and adequately. This information booklet for people living with mild hemophilia and their families was developed by the Atlantic Hemophilia Nurses Group of the Canadian Association of Nurses in Hemophilia Care (CANHC).  Published by Bayer HealthCare. PDF

(The) Management of Women with Bleeding Disorders
The purpose of this work is to provide for women with bleeding disorders suggestions on
   1. the optimal management through multidisciplinary clinics,
   2. the laboratory investigation of bleeding disorders,
   3. the medical treatment of menorrhagia and
   4. the management of pregnancy.

Pain: The Fifth Vital Sign
A resource on managing pain for people with bleeding disorders. PDF

Passport to well-being
In 2004, the Canadian Hemophilia Society, with the support of Baxter BioScience initiated a program aimed at empowering people with bleeding disorders, at all stages of their lives, to maximize their quality of life. The Passport to well-being program provides people with bleeding disorders, at all stages of their lives, with information, skills and strategies to enable them to maximize their quality of life. Passport to well-being is designed around 6 modules which focus on:

Charting Your Course 
Improving the treatment of bleeding disorders through innovative monitoring of product usage

Destination Fitness 
Helping patients to develop personalized fitness plans to improve overall health

Homecare: The Road to Independence 
Helping patients take greater control of their disease through home treatment

Roadmap for Managing Pain 
Raising awareness of ways to manage the pain that is so common to people with bleeding disorders.

Navigating the ER
Helping people with bleeding disorders prepare for visits to the Emergency Room.

Bon Voyage! Travelling with a Bleeding Disorder
Helping people with bleeding disorders reduce the risks of travel so they can enjoy their adventure to its fullest.

Key messages relating to these themes are communicated through educational booklets, newsletters and workshops targeted at children, adults and caregivers of people with bleeding disorders. Participants in the program receive a personal passport which they have stamped with a visa when they take part in a workshop or related activity.


Tips for finding childcare: A Guide for parents of children with bleeding disorders
Starting childcare is a major step for families living with a bleeding disorder. For both parents and children, the transition is an important part of learning how to live with a bleeding disorder. However, making decisions about childcare and finding the right caregiver can be a challenging process. This booklet provides information to help parents of children with bleeding disorders assess their childcare needs and suitable options, with steps for finding the right caregiver. The booklet also outlines basic medical, health and safety information that caregivers need to know. PDF

Using an Implantable Venous Access Device (IVAD) at Home
A general information guide to using an Implantable Venous Access Device (IVAD) to infuse factor concentrates. Developed and published by the Northern Alberta Comprehensive Hemophilia Centre. Booklet.

Von Willebrand Disease - The Most Common Bleeding Disorder: Your Questions Answered
A general information booklet about the symptoms, diagnosis, and treatment of VWD. Developed and published by the Canadian Hemophilia Society. PDF

Von Willebrand Disease: What School Personnel Should Know
An information booklet about von Willebrand Disease for teachers and other school personnel. Developed by the Atlantic Hemophilia Nursing Group of the Canadian Association of Nurses in Hemophilia Care (CANHC).