Other Resources

This is a compiled list of existing educational resources not developed by DATCH, which provides support for people with hemophilia, their families and caregivers. The goal is to improve the health and quality of life for people with hemophilia. Resources highlight basic information and the topics of treatment, physical activity, inhibitors, pain, emergency, independence, and travelling. All resources are affiliated with an organization based in Canada. All resources are available online in the format of a downloadable PDF document, book, game, app, video, or PowerPoint. All resources are also free or cost a low fee. This list of resources is not comprehensive. All resources were evaluated on a list of criteria. The criteria evaluated the topics of currency and timeliness, authority, organization affiliations, purpose, quality of the information, representativeness/applicability, ability to obtain/access, and accessibility. It consists of 40 questions. Resources deemed high quality were included in this compiled list.

DISCLAIMER! Resources and information are provided for your general information only. It is not medical advice and is not a substitute for visits with healthcare professionals.

Tips for finding childcare: A Guide for parents of children with bleeding disorders

A booklet that provides information to help parents of children with bleeding disorders find the right childcare for their child by assessing their childcare needs and suitable options. It also outlines basic medical, health and safety information that caregivers must know.

Ages 0-2

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All About Me

A storybook that helps school-age children talk with their classmates about their bleeding disorder.

The Story of Miko - A Cheeky Little Dog with Hemophilia

A picture book that supports children’s treatments by enabling parents to introduce and familiarize their child with simple treatment terms, explanations, and more painful forms of treatment. It offers pictorial support, and aims to encourage collaboration and development of parent’s support strategies alongside their children.

Ages 2-7

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Ages 7-11

Medikidz Xyntha Solofuse Explained

A comic book part of the Medikidz comic book series of superhero adventures inside the human body. Medikidz is an initiative that aims to help children learn about health and disease in an exciting and fun way. In this book, the Medikidz explain xyntha, a medicine used to treat bleeding in people with hemophilia A.

HemoAction Online Games

Online games for children with hemophilia that teaches about how to prevent bleeds, manage hemophilia while learning about the clotting process, types of bleeds, factor infusions, and suitable physical activities. It features a memory game, fill-in-the-blanks race, picture matching game, and web-book that explains each card.

In-HemoAction Card Game

A card game for children with hemophilia, that is educational, fun, easy to understand, and interactive. It is an update of the HemoAction game and features additional topics of prophylaxis, inhibitors, bypassing agents, immune tolerance induction, and physiotherapy.

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Ages 11-17

Me - Period Flow Assessment

An app for assessing menstrual flow and presenting quantified evidence to the doctor. It uses components of Pictorial Blood Assessment Chart (PBAC) and automatically calculates your menstrual scores. It also warns of a risk of possible menorrhagia and advises communication with your doctor. It is available in Apple and Google Play stores.

MyCBDR

An app for people with bleeding disorders to record and report home treatments and bleeds to their health care team. It is available in Apple and Google Play stores.

Self-Infusion: Confidence, Autonomy, Freedom

A video starring real-life young people with bleeding disorders, who describe their journey to learning self-infuse clotting factor concentrates and the impact of this on their life.

Playing it Safe - Bleeding Disorders, Sports & Exercise

A booklet for parents of children with hemophilia, that describes the safest and riskiest ways for people with hemophilia to participate in sports and exercise.

Me and My Genes

An interactive animated video that provides pre-teens and teenagers who are carriers of hemophilia A or B information about carrier inheritance, testing, and bleeding symptoms management. It also includes interactive buttons for viewers to test their knowledge and access tips, myths, and fun facts. *This resource requires a DVD player and must be ordered using the online order form: www.hemophilia.ca/request-a-publication/.

MyWAPPS

An app that allows users to view real-time estimates of their factor level based on their individual pharmacokinetic information, which is linked by a healthcare professional. It also comes with an estimator function that allows forecasting of the user’s predicted factor levels. *Please note that you will have to contact your physician to set this application up.

WeThrive

WeThrive is the first app that can identify heavy menstrual bleeding in adolescents. It can be used for period tracking, period predictions, symptom tracking, as a resource to find clinics, and period summaries and scores can be shared with users’ health care providers. Further, with a user's consent, anonymized period tracking data may be collected by researchers to further advance knowledge. It is available for free download on Google, Android, and Apple stores.

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All Ages

All ages

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