Hemophilia and Bleeding Disorders
What to Expect

What to Expect at Your Appointment at the Hemophilia and Bleeding Disorders Program

Our caring and compassionate providers in the Hemophilia and Bleeding Disorders Program help kids with mild, moderate and severe bleeding disorders get the care they need to be as healthy as possible. This page can help answer any questions you have about your child’s first outpatient clinic appointment with us. We look forward to partnering with you!

Here's what you need to know to prepare for your child’s first visit to our program.

Making an Appointment

If your child needs an outpatient clinic appointment with the Hemophilia and Bleeding Disorders Program, their pediatrician or another provider will give you a referral. You can also contact us to schedule an appointment.

Before your visit, our nurse care manager and one of our hematologists will review your child’s health history.

After Making the Appointment

Our team will also contact your child’s doctor for any medical records and test results. You won’t need to prepare, fill out any forms or pre-register before arriving for your appointment.

On the Day of the Visit

We understand that a hemophilia or bleeding disorder diagnosis can be overwhelming. Our colorful, welcoming clinic is designed to put you and your child at ease, and toys are available to distract your child from any nervousness or worry.

During your appointment, our multi-disciplinary team provide extensive education about your child’s known condition and how to manage it. In addition, our child life specialists can comfort your child during lab tests, as well as teach them coping strategies.

Before Arriving at the Clinic

Please arrive 15 minutes before your scheduled appointment time. Allow an additional 10 minutes for parking and walking to our clinic. If you’re running late, please contact us.

You won’t need to bring anything with you to your first appointment. For future visits, if your child is a patient in our hemophilia comprehensive clinic, they will need to wear or bring running shorts and shoes to meet with our physical therapist.

At the Appointment

The length of your first appointment depends on your child’s needs. Appointments for children with mild bleeding disorders last between one to one and a half hours. Hemophilia comprehensive clinic visits with the multi-disciplinary team can last between three to four hours.

During your time with us, your child will meet with the hematologist and nurse care manager. They may also see a social worker and a child life specialist if needed.

Patients attending the hemophilia comprehensive clinic will meet with:

  • Social worker
  • Genetic counselor
  • Health educator
  • Dentist
  • Child life specialist
  • Clinical research coordinator
  • Nurse care manager

The clinic appointment will include:

  • A health history, including family history
  • Physical exam to evaluate new bleeding disorder symptoms
  • Lab tests

As research study and clinical trial opportunities related to your child’s health history and condition arise, our clinical research coordinator will contact you to explain them and invite you to participate. Being part of a research study isn’t required — the choice to join a study is up to you and your child.

At the end of your appointment, you will receive a written after-visit (discharge) summary that explains what happened during your visit and includes any instructions about your child’s care.

Before you leave, if your child was seen in our hemophilia comprehensive clinic, our staff will schedule follow-up appointments for your child every six months to a year. Follow-up appointments for children with mild bleeding disorders are scheduled as needed. Our nurse care manager will contact you after your appointment if we need to schedule any follow-up care.

After the Appointment

After your appointment, we will send a summary of your visit to your child’s pediatrician or the doctor who referred you.

Feel free to contact us between appointments. We are available to answer questions about your child’s care and to provide prescription refill orders. You can use MyChart for prescription refills and non-medical questions as well.

When to Call

Please contact us:

  • If your child is injured so we can determine if we can treat them or if they need to go to the emergency department
  • Within at least two weeks of any scheduled surgery or procedure your child is having

Also please contact us any time you have questions or concerns. We are here to help!