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The Pediatric Comprehensive Marfan Program

Marfan syndrome is a genetic disorder that affects the body’s connective tissue—the tissue that helps our bodies grow and develop properly. Marfan syndrome and related connective tissue disorders can affect many different parts of the body including the heart, blood vessels, bones, joints, eyes, lungs, skin, and nervous system. Because the symptoms of Marfan syndrome and related connective tissue disorders can worsen over time, it’s important to receive accurate and early diagnosis and treatment.

Columbia Children’s Health and Morgan Stanley Children’s Hospital are recognized as an official Pediatric Marfan Center by the Marfan Foundation. This multidisciplinary collaborative program is dedicated to providing excellent care to patients with Marfan syndrome, Loeys-Dietz syndrome, or other connective tissue disorders. Centered within the Division of Pediatric Cardiology and Cardiovascular Surgery, we connect patients with the various subspecialties to ensure that they receive the best and most comprehensive care possible. Through this collaborative care program we ease the burden on families and ensure that our patients receive the best and most comprehensive care possible. Below is a list of subspecialists that are participating in our program and have committed to providing care to patients with all types of connective tissue disorders.

Referring practitioners or patients can reach our program coordinator, Kathleen Gilmartin, at kg2764@cumc.columbia.edu, or by phone at (212) 342-1562.

CUIMC/MSCH Pediatric Marfan Program Team

Medical Directors

Emile Bacha, MD

Michael DiLorenzo, MD MSCE

 

Pediatric Cardiology

Michael DiLorenzo, MD MSCE

Teresa Lee, MD

Thomas Starc, MD

Julie Vincent, MD

 

Cardiogenetics

Teresa Lee, MD MS

 

Pediatric Cardiothoracic Surgery

Emile Bacha, MD

Paul Chai, MD

David Kalfa, MD PhD

Damien LaPar, MD MSc

 

Pediatric Orthopedics

Charles A. Popkin, MD (Joint Laxity)

Michael Vitale, MD (Spine)

 

Ophthalmology

Irene Maumenee, MD

 

Pulmonology

Hossein Sadeghi, MD

 

Neurosurgeon

Neil Feldstein, MD

 

Child Life Specialist

Alison Heffer, MS.Ed, CCLS

 

Program Coordinator

Kathleen Gilmartin, MSN CRNP