What to Expect

What to Expect at Your First Visit to the Rasopathy Clinic

Every child is a gift. Unique. Special. One of a kind. When your child is born with a rare genetic disorder like one of the Rasopathy syndromes, you treasure them even more. But the care they need can be overwhelming and isolating. Most of these genetic conditions cause multiple medical issues and require several specialists.

That's where the Rasopathy Clinic at Cincinnati Children’s comes in. You’ll have access to our experts in genetics, gastroenterology, neurology and endocrinology, all in one place. We’ll also help you help manage your child’s medical treatments and testing.

You are not alone. We are committed to offering comprehensive care to your child, as well as supporting you and your whole family. You can enjoy your rare treasure, and they can experience a full life.

Making an Appointment for the Rasopathy Clinic

For more information or to make an appointment, contact us. Your child’s pediatrician can also refer you to our clinic.

For international patients, please fill out and send this online form. A staff member will contact you within 48 hours.

How to Prepare for Your First Visit to the Rasopathy Clinic

Please bring any of your child’s past genetic testing and medical records to your first appointment. It may be helpful to think about your personal and family history medical history.

On the Day of Your First Visit for the Rasopathy Clinic

Please let us know if you or your child have any concerns or special needs that will make your visit more comfortable.

Arriving at Your Appointment

The Rasopathy clinic sees patients at our Burnet campus and Liberty campus locations. Whether you are coming to our Burnet campus or Liberty campus location, our visiting section can help guide you.

We recommend you arrive about 30 minutes early. This allows you time to park, find our office, and register for your first visit. If you’ll be more than 30 minutes late, please contact us to let us know.

At Your Appointment

Your visits to the Rasopathy Clinic will be longer and may include more medical professionals than a typical visit to your family doctor. You will meet with a genetic counselor and a geneticist on your first visit. You also may see other providers like a neurologist.

The genetic counselor will meet with you to collect a detailed medical history. This includes your child’s prenatal history, birth history, developmental history, and family history. They also will provide details about the Rasopathies syndromes and discuss your child’s testing options or results.

The geneticist will perform a physical exam on your child. Then, they will recommend your next steps, which may include imaging studies, laboratory testing, and genetic testing. The geneticist also may recommend that your child see other specialists for further testing.

After Your First Visit at the Rasopathy Clinic

You will receive an “After-Visit Summary” at the end of your visit. It will include important details about upcoming appointments and test results. Your primary care doctor and/or referring physician will also receive this summary. If you choose to undergo testing, your genetic counselor will work with you to arrange the testing and will report the results to you when they are complete.