Skip to main content


Pediatric Marfan Syndrome

What is Marfan syndrome?

Marfan syndrome is a disorder involving the body's connective tissue. Connective tissue has many important functions, including the following:

  • Assisting with growth and development of the body's cells, both before and after birth
  • Supporting tissues in the body
  • Acting as an adhesive to hold certain tissues together
  • Protecting joints
  • Facilitating the passage of light through the eye

A defective (FBN1) gene associated with Marfan syndrome affects the formation of a protein in connective tissue called fibrillin, which impacts the integrity of many organs and structures in the body. Organs and body systems that can be impacted include, but are not limited to, the following:

  • Heart and major blood vessels
  • Lungs
  • Skeletal system
  • Spinal cord
  • Eyes
  • Skin

According to the March of Dimes, more than 200,000 people in the U.S. are affected by Marfan syndrome. Marfan syndrome occurs in equal numbers in males and females, and also appears equally in all races and ethnic groups.


Our team is standing by to schedule your child’s appointment.

Frequently Asked Questions

What is Marfan syndrome in children?

What causes Marfan syndrome in a child?

Which children are at risk for Marfan syndrome?

What are the symptoms of Marfan syndrome in a child?

How is Marfan syndrome diagnosed in a child?

How is Marfan syndrome treated in a child?

What are possible complications of Marfan syndrome in a child?

How can I help my child live with Marfan syndrome?

When should I call my child's healthcare provider?

A Child in a Pink Ride-on Car.

Rare Disease Treatment at Children's National Hospital

In the Rare Disease Institute at Children's National, we focus on providing advanced care for young patients with rare genetic conditions. Discover more about the treatment we offer.

Girl Smiling and Clapping

Help Kids and Make a Difference

Invest in future cures for some of life's most devastating diseases. Give today to help more children grow up stronger.


Jordan's Story

Meet the Providers Who Treat Marfan Syndrome


Boy smiling with nurse in the background

Cancer Genetics Program

Our cancer genetics experts help answer important questions about your child's inherited risk for cancer.

Orthopaedic surgeon and male patient walking in hallway

Spine Program

Children's National offers children with spinal deformities a range of treatments, including innovative casting techniques, and hope for a bright future.

Rare Disease Institute - Genetics and Metabolism

Children's National Rare Disease Institute (CNRDI) is a first-of-its-kind center focused exclusively on advancing the care and treatment of children and adults with rare genetic diseases.