What should I think about before scheduling an appointment?

  • What you would like to get out of the appointment. At the Myhre Syndrome Clinic, we aim to get to know our patients very well. We create treatment plans for each person’s unique needs and symptoms. In some cases, we might offer similar treatments and services that you can find closer to home.
  • The cost and length of time for travel. Visiting the clinic and traveling can be expensive. It depends on your health insurance and budget. It can also take many days or weeks to travel. We can give you an estimate (best guess) of what your medical costs might be. You should also factor in travel and lodging expenses for you and your family and loved ones.
  • You or your child’s primary care doctor (PCP). If you choose to come to the Myhre Syndrome Clinic, you or your child need a primary care doctor at home that we can speak with about your or your child’s care.
  • How to talk with your care team at the Myhre Syndrome Clinic. We like to use email to keep in touch. We have found that Hotmail® email addresses do not work well. If you choose to come to the clinic, please use another email service.

 

How can I schedule an appointment?

Angela Lin, MD, co-director of the Myhre Syndrome Clinic, will connect you to the International Patient Center at Mass General and MGHfC. Our front desk staff will contact you to schedule the appointment.

Which doctors will I or my child see at the appointment?

It depends on your or your child’s needs and symptoms. You will receive this information and more information about Myhre syndrome in the mail before your appointment.

If I cannot or choose not to come to the Myhre Syndrome Clinic, what can I do?

In some cases, you and your local doctor may be able to get a formal, written second opinion from Dr. Lin. We call these Remote Second Opinions. Learn more about the second opinion process here.

Does the Myhre Syndrome Clinic have any trials or research I could take part in?

Right now, there are no trials or research for patients to take part in.

Rev. 2/2018. MassGeneral Hospital for Children and Massachusetts General Hospital do not endorse any of the brands listed on this handout. This handout is intended to provide health information so that you can be better informed. It is not a substitute for medical advice and should not be used to treatment of any medical conditions.