Welcome to the Myhre Syndrome Clinic at MassGeneral Hospital for Children (MGHfC) and Massachusetts General Hospital! In this handout, you will learn what to expect and how to prepare before the first appointment. You will also meet members of the care team.

How Do I Schedule an Appointment?

  • Call the Medical Genetics Coordinator at 617-726-1561
  • Call the Registration and Referral Center to register as a patient at MGHfC or Mass General at 866-211-6588
  • If necessary, get approval from your health insurance company for the appointment. The care team at the Myhre Syndrome Clinic can help your primary care provider write a Letter of Medical Necessity, if needed.

What Will Happen at the First Appointment?

  • You or your child will meet with different members of the care team. We will do our best to schedule as many appointments on the same day as possible. We may schedule some future appointments for any doctors that you or your child did not see on the first day.
  • We will go over past medical care and the current care plan.
  • You can ask the care team any questions about Myhre syndrome, your care or your child’s care.
  • We will ask permission to take a photo of you or your child for the medical record.

How Long is the First Day of Appointments?

If you or your child are seeing many doctors, the first day takes about 4 hours total. Appointments with Genetics and Pediatric Cardiology take at least 1 hour each.

What Should I Bring for the First Day of Appointments

  • Mail or email your or your child’s medical records to the care team. We require that medical records be available to us before the visit. Bring recent medical records to the visit. This includes important tests and appointment notes.

Which Doctors Will I or My Child See?

  • Every patient will see Angela Lin, MD, co-director of the Myhre Syndrome Clinic and a geneticist (genetics doctor) at MGHfC and Massachusetts General Hospital.
  • For heart problems, you or your child would see Mark Lindsay, MD, a pediatric cardiologist (heart doctor).

Is There Research on Turner Syndrome at MGHfC?

Yes. Please ask Dr. Lin if you want to learn about research on Myhre syndrome at MGHfC and Mass General. Taking part in research is your choice. It will not affect your or your child’s care.

Where Can I Learn More About Travelling to MGHfC?

Learn more about parking and staying in Boston.

 

Meet the Team

Cardiovascular Genetics

Aerodigestive Team

Pulmonary Medicine Team

Rheumatology Team