RASopathies impact numerous body systems, including the heart and blood vessels (cardiovascular), glands and hormones (endocrine) and nervous systems. Management of these conditions involves multiple specialists, and the coordination of care can be difficult. The RASopathy Program team at Lurie Children’s will help children and families coordinate appointments with different specialists, both within and outside of Lurie Children’s. This ensures that the proper care is received at the right time. Our team is dedicated to supporting and advocating for both the physical and emotional needs of children and their families.
What to Expect
The First RASopathy Clinic Visit
Visits to the RASopathy Clinic will be more involved than a typical visit to your pediatrician or primary care provider. In fact, the visit begins before you arrive. Our team reviews the child’s medical records, and a genetic counselor may call the child’s family, or caregiver, to discuss why the child was referred to us. The genetic counselor will ask questions about the child’s medical and family history and tell you what to expect at the first appointment.
At the appointment, you will meet our RASopathy team, which includes a genetic counselor, physician assistant, and/or a geneticist (doctor), all who have expertise in RASopathies. We will review the medical and family histories, including prenatal (before birth), birth and developmental. A child’s developmental history gives us information about their key growth milestones. The visit will also include a physical exam. Our team will explain what next steps are recommended such as medical imaging, laboratory and genetic testing. Much of this testing can be done at Lurie Children’s, including genetic testing for many genes that are associated with RASopathies. We will also provide referrals to other specialists as needed.
After the first visit, we will recommend regular follow-up with our team. This varies from every three months to annual visits. However, if any concerns arise between visits, our team is always available to
Make an Appointment
To schedule a first-time or return appointment, please call the Division of Genetics directly at 312.227.6120
For more information, please call our Clinic Coordinator, Carolyn Serbinski at 312.227.4391
Our team works closely with researchers who study RASopathies. Thus, we are informed of cutting-edge treatment and technology that may benefit the children in our care. We can connect interested children and families with opportunities to participate in research studies that can help us better understand the RASopathies and possibly contribute to the discovery of future therapies.