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Myhre Syndrome Clinic

Welcome to the Myhre Syndrome Clinic at Massachusetts General Hospital. Our clinic provides state-of-the-art care by a multidisciplinary team of providers for people of all ages and their families who live with Myhre syndrome.

To make an appointment, call 617-726-1561

Overview

The Myhre Syndrome Clinic provides compassionate care with an expert multidisciplinary team. As a subspecialty program, we do not offer routine primary care, but instead we provide a comprehensive evaluation, specific to the needs of people with Myhre syndrome. Our doctors work with the patient’s primary care provider to identify specialty needs and to coordinate care and improve outcomes.

Multidisciplinary Team

With joint leadership between Medical Genetics and Pediatric Cardiology, we have assembled a multidisciplinary team of medical, radiology and psychosocial support.

Co-Directors: Angela E. Lin, MD, Medical Genetics and Mark E. Lindsay, MD, PhD, Pediatric Cardiology

Our Services

Mission Statement

We understand what people and families living with a rare disease experience each day. As a collaborative, multidisciplinary team serving people with Myhre syndrome of all ages and their families, we provide clinical care, education and support. We are passionate about the importance of research to answer the questions that families ask us.

Before Your Appointment

Request an appointment: To request an appointment in this clinic, please call the Medical Genetics Patient Service Coordinator (617-643-3133 or 617-726-1561).

  • You will be asked to contact MGH registration to obtain a medical record number (866-211-6588).

What Will Happen at the First Visit? Which Doctors Will I See?

  • We will start by reviewing your past medical care, especially genetic and cardiac testing, and current care plan. We address the questions that you think are most important.
  • Each visit is personalized to meet your needs. All patients are seen on the first visit by Dr. Lin (Genetics). Most people see other specialists. Testing can be planned, too.
  • Most patients also meet with Dr. Mark Lindsay in Pediatric Cardiology (617-724-4363).

How Should I Prepare for the Visit?

  • Before we can meet you, we must have some of your past medical records, including any important consultations, tests, and procedures.
  • If your son or daughter has received medical care from a health care provider outside Mass General, please use the release form below to request that medical records be sent to us in advance of your visit so that we can review them. In general, we would like to see the earliest, most recent, and something in between.

Medical Records Release

Patient Resources

Healthcare Professionals

Our doctors work with the patient’s primary care provider to identify specialty needs and to coordinate care and improve outcomes.

General Review about Myhre syndrome

GeneReviews Myhre Syndrome (Starr LJ, Lindor NM, Lin AE. Myhre Syndrome. 2017 Apr 13. In: Pagon RA, Adam MP, Ardinger HH, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2017.

Patient Stories

  • Finding a medical home away from home with a rare disease diagnosis: Anna's story - 8/11/2017, Mass General

    At 16, Anna Young was diagnosed with Myhre Syndrome, a very rare genetic condition. Since coming to the Myhre Syndrome Clinic at MGHfC, she has found her place in the world and learned the skills to thrive as a young adult.

  • Patient ambassador is a guiding light for the Myhre Syndrome Clinic - 8/11/2017, Mass General

    April Lanord's son, Alec Bruneau, was considered a medical mystery until he received a diagnosis of Myhre Syndrome, a very rare genetic condition, during childhood. Since coming to the Myhre Syndrome Clinic, Alec has found a new sense of confidence and comfort in who he is. April was also inspired to become an ambassador for the clinic, helping other families get oriented to Boston and MGHfC.

Contact

Yawkey Center for Outpatient Care, Suite 6C
55 Fruit Street
Boston, MA 02114

Phone: 617-726-1561
Fax: 617-726-726-1566
Public Transportation Access: yes
Mailing Address:
MassGeneral Hospital Myhre Syndrome Clinic
175 Cambridge St.
Boston, MA 02114
Directions to Mass General Hospital

To make an appointment, call 617-726-1561

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