Fanconi Anemia
What to Expect

What to Expect at Your First Appointment at the Fanconi Anemia Comprehensive Care Center

If your child has been diagnosed with Fanconi anemia, you may be frightened, worried and overwhelmed by what they might need. It’s OK to feel concern for your child—we’re here to help. There are two different types of first appointments at our center—we may see your child just for a consultation, or we may schedule a comprehensive visit for your child to see many different providers over the course of several days.

Whatever the length of the appointment, know that our primary purpose is to get to know your child and determine next steps to help them live their best life.

Making an Appointment at the Fanconi Anemia Comprehensive Care Center

We want it to be easy for you to get the care your child needs. You can call us to self-refer to our program, or your child’s pediatrician or another provider can refer you. Once we receive your child’s information, our team will review all medical notes and test results before your visit. The care manager will work with you to determine the best timeline for your child’s first appointment.

Before Your Appointment

After the first phone call, your care manager will provide forms for you to complete. Please return those forms as soon as possible before your first appointment so we can collect and review records before your visit.

The care manager will be your advocate throughout your child’s treatment at our Fanconi Anemia Comprehensive Care Center. They will answer any questions you have about what to expect and where to go.

On the Day of Your Visit to the Fanconi Anemia Comprehensive Care Center

Arriving At Your Appointment

The Fanconi Anemia Comprehensive Care Center is located at the Burnet Campus of Cincinnati Children’s.

Please arrive about 30 minutes ahead of your appointment time. This allows you 15 minutes to park and walk from the parking garage to our clinic, and 15 minutes to check in at our front desk. If you are running late, please call us and ask to speak to your care manager.

At Your Appointment

If your first appointment is for a consultation, you’ll only need one day for the visit. You will spend a few hours in the clinic, plus some extra time for lab work.

If the appointment is a comprehensive visit, it will last two to three days, depending on the specialists your child needs to see. Your child may visit with specialists from these areas: endocrinology, otolaryngology, gynecology, audiology, urology, nephrology, gastroenterology, cardiology, pulmonology or hand surgery. They also may see a blood and marrow transplant specialist or a dietitian.

During the visits, providers will give your child a physical exam, discuss their health history and review test results. Depending on the individual circumstances, your child also may have genetic testing.

Before you leave, we will discuss a follow-up plan with you and your child.

After Your Visit to the Fanconi Anemia Comprehensive Care Center

You will receive an “After Visit Summary” at the end of your appointment. It will include important details about next steps and any upcoming appointments. It also will include contact information for your child’s care team.

If your child has undergone any testing, you will receive results within approximately one week of the visit. For genetic testing, you will receive results within approximately six weeks. These times will vary depending on the testing required.