Cardiovascular Connective Tissue Disorders Program

If your child has an inherited connective tissue disorder, the Cardiovascular Connective Tissue Disorders Program at Stanford Medicine Children’s Health is the only one of its kind on the West Coast and one of the few in the United States. Our program is a comprehensive, multidisciplinary program that diagnoses, educates, and treats children from infants to young adults with inherited connective tissue disorders such as Marfan, Williams, and Loeys-Dietz syndromes.

What is a connective tissue disorder and how does it manifest?

Heart murmurs or symptoms of vascular failure or heart failure are often the first indicators of a connective tissue disorder in young patients.

Connective tissue is needed to help kids grow and develop. Connective tissue holds the body’s tissues and organs in place. It defines and insulates muscles, tendons, ligaments, nerves, skin, and mucous membranes. Connective tissue also transports substances within the body, including blood and lymph. Since connective tissues, like collagen, are found throughout the body, connective tissue disorders can be far-reaching—affecting the heart, arteries, bones, joints, teeth, and eyes. Therefore, children with connective tissue disorders often require care from a wide range of specialists, including highly specialized pediatric cardiologists.

At Stanford Medicine Children’s Health, we have assembled a care team of a dozen of the top pediatric specialists in the nation to offer coordinated care and holistic services for your child from specialties that include:

And to provide truly comprehensive care in real time, we bring our multidisciplinary care team together to meet with you and your child at our Cardiovascular Connective Tissue Disorders Clinic on a set evaluation day. The program is designed in a uniquely patient-centered way, making it highly convenient for families. Throughout your child’s treatment and beyond, we are happy to partner with your current or referring physician.

Why Stanford Medicine Children’s Health for your child’s cardiovascular connective tissue disorders

At Lucile Packard Children’s Hospital Stanford, we have created a leading center in the nation for treating cardiovascular connective tissue disorders. As part of this overarching goal, we do the following:

• Offer comprehensive care in an easy-to-access format. We understand how difficult it can be for parents of children with complex health conditions to coordinate care from multiple specialists. That’s why we bring nationally recognized connective tissue disorder experts together in one place on one day for you and your child. Our unique evaluation day approach makes us one of a few programs nationwide that can provide truly holistic care to your child.
• Provide access to multiple renowned experts on various disorders. We’ve brought great minds together to diagnose and treat pediatric connective tissue disorders and their complications in patients all over the world. Several of our physicians are known as national and international leaders in treating children with connective tissue disorders. For example, our program’s main geneticist, Uta Francke, MD, was the first to discover genes associated with Williams syndrome and to define genetic variants causing Marfan syndrome, as a physician scientist at Stanford Medicine. Allan Reiss, MD, psychiatrist, is a nationally known brain researcher on Williams and Marfan syndromes. Because we see more children for connective tissue disorders than most centers nationwide, our care and research is rich in expertise and knowledge, helping us catch details that might otherwise be missed and provide treatments that might otherwise seem impossible.
• Treat complex connective tissue disorders and related heart conditions. We see the highest volume of children with complex and rare connective tissue disorders and related heart and artery conditions on the West Coast and are among the highest-volume centers in the nation. We are the premier program for treating cardiovascular issues in Williams syndrome and are leaders in Marfan, Loeys-Dietz, 23 duplication, and a host of other rare syndromes. When your child needs additional cardiac care, we assemble a custom-built team of our program’s experts just for you. Our pediatric heart surgeons at the Betty Irene Moore Children’s Heart Center successfully treat some of the most critically ill children in the country and the world. We are known for performing more heart surgeries (700+ each year) for some of the most complex cases of heart disease, compared with peer hospitals around the country. And for those rare cases when a heart transplant may be needed, our heart transplant volumes and outcomes are outstanding, better than the national average.