Resources and education for materials for bleeding disorders
We understand that questions and needs may arise at any point along your healthcare journey and that you may be seeking additional information. There are many available resources to assist families understand bleeding disorders and find support. Our team has put together a list of materials and resources that other families facing bleeding disorders have found helpful.
Educational materials
Bleeding disorders: Emergencies in hemophilia
Learn about injuries, signs, and symptoms that are considered emergencies in a person with hemophilia.
Nosebleed treatment with a bleeding disorder
Learn about common causes for nosebleeds, how to treat them, and when to call the clinic.
Desmopressin (DDAVP) for bleeding disorders
Learn about DDAVP, a medication that may be used for bleeding in patients with certain bleeding disorders.
Head Injury with a Bleeding Disorder
People with bleeding disorders are at greater risk of head injuries. Learn about the signs and symptoms to be aware of, and the importance of reaching out to your care team.
Bleeding disorders: Allergic reaction to factor
Learn about allergic reactions to clotting factor agents, also called inhibitors.
Bleeding disorder educational videos for kids and teens – YouTube
A series of short videos teaching specific skills and knowledge for managing bleeding disorders.
Community building resources
StoryCorps: Produced by Children’s Minnesota StoryCorps Legacy Team
Children’s Minnesota Partnered with StoryCorps and patient families to record, preserve, and share their stories about life with a bleeding disorder. These stories have been captured in the form of 14 short podcasts.
National Bleeding Disorders Foundation, formerly NHF | National Bleeding Disorders Foundation
The National Bleeding Disorder Foundation is a nonprofit organization dedicated to improving the lives of those living with inheritable bleeding disorders. Their website has many resources including information about advocacy, research, education, and community engagement.
Hemophilia Foundation of Minnesota/Dakotas (HFMD)
HFMD is the local bleeding disorder chapter which provides services and educational programming to the bleeding disorder community of Minnesota and the Upper Midwest. The Children’s Minnesota Center for Bleeding and Clotting Disorders partners closely with HFMD in support of their mission.
About Bleeding Disorders | World Federation of Hemophilia
A non-profit organization dedicated to improving and sustaining bleeding disorder care around the world. Their website has educational materials including fact sheets, videos, and webinars; data collection from around the globe; and advocacy initiatives.
Our Story – Hemophilia Federation of America
A community based, patient-centered organization committed to championing the needs of families living with bleeding disorders.
Patient Resources | Foundation for Women & Girls with Blood Disorders
The patient resource page of the Foundation for Women & Girls with Blood Disorders has information and educational resources on topics unique to women and girls with bleeding disorders or other blood disorders.
Additional resources for families
Children’s Minnesota offers a range of resources to provide assistance and support during your time with us.
Interpreter Services for Families
Information about our Interpreter services and how to request an interpreter during your visit.
Financial counseling and assistance
Learn more about how our Financial Counseling and Assistance services may be able to assist you with your financial questions and needs. Applications for financial assistance are also listed on this page.
Family Resource Center
Information about our Minneapolis and St Paul Family Resource Centers and the services and amenities that they offer to make your stay more comfortable.
