Extensive Support for Families

Brothers practice giving factor treatment. 

At the Hemophilia Treatment Center at Cincinnati Children’s, we provide extensive support for families dealing with issues related to hemophilia.

Preparing for an Emergency

Our commitment to holistic care includes helping patients prepare for emergencies. For example, all patients receive a personalized emergency card stating their type of bleeding disorder, its severity, appropriate treatment, factor dosage, allergies and other specialized medical information. This card is updated at clinic visits to ensure that the information is current.

We partner with our local hemophilia chapter, the Tristate Bleeding Disorders Foundation, to provide Medic Alert memberships and identification tags, such as bracelets and necklaces, to hemophilia patients seen at Cincinnati Children’s Hemophilia Treatment Center. This is a service we provide as a convenience to our patients.

Travel letters can be provided, upon request, for patients who are going out of town. This letter explains the patient’s hemophilia type and treatment and can help facilitate rapid and appropriate therapy in an emergency. In addition, we can provide the names of hospitals nearest a patient’s travel route that offer hemophilia treatment.

Support at School

The Hemophilia Treatment Center at Cincinnati Children’s offers additional support to help patients and families in a school setting. These include:

  • School visits by a nurse care manager, who can make an informal presentation about hemophilia for teachers and staff at the child’s school
  • The School Intervention Program, whose services are designed to help children succeed in the academic setting

Related Resources

At the Hemophilia Treatment Center at Cincinnati Children’s, we encourage families to take advantage of the following resources:
Do the 5: Steps for Living with Hemophilia: This comprehensive guide includes fact sheets covering all the essentials that you need to know about living with hemophilia. The National Hemophilia Foundation’s five strategies for living a longer and healthier life:
  • Get an annual comprehensive checkup at a hemophilia treatment center.
  • Get vaccinated. Hepatitis A and B are preventable.
  • Treat bleeds early and adequately.
  • Exercise and maintain a healthy weight to protect your joints.
  • Get tested regularly for blood-borne infections.

Patient & Family Wellness Center at Cincinnati Children’s: Includes specialists from Child Life, Financial Services, Pastoral Care and Social Work. These network resources can provide:

  • Emotional, psychosocial and spiritual support
  • Assistance with schooling concerns
  • Community outreach and education
  • Information about additional resources (financial, insurance, community)
  • First Steps, a support group for patients and families
  • Assistance with lodging, ground transportation and other concerns 

The Cancer and Blood Diseases Institute at Cincinnati Children’s hosts a week-long summer camp every year at Camp Joy Outdoor Education Center in Clarksville, OH. The staff works closely with the Cincinnati Children’s medical team to create a safe, supportive environment for children, no matter what their abilities. The camp is an opportunity for kids ages 7-16 to develop new skills, form lasting friendships and build their self-esteem, all while having a great time. Patients are encouraged to bring a sibling. See details.

Other organizations provide extensive support and education for patients and families dealing with hemophilia, including:

Local, State, National, and International Education, Advocacy and Support 

Contact us.
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