Shriners Children’s supports families and provides full service care to children with skeletal dysplasia conditions.

Skeletal dysplasia is an umbrella term for more than 400 hundred rare conditions which cause a child’s bones and cartilage (connective tissue) to develop differently. It is sometimes referred to as dwarfism. Bones in the spine, skull, arms and legs may be shorter or crooked. Some skeletal dysplasias also cause developmental delays.

These conditions are overwhelming for new or expectant parents, but Shriners Children’s, as one of the largest pediatric orthopedic healthcare systems, has specialized teams and support services to help children with skeletal dysplasia enjoy healthy, full lives.

Shriners Children’s offers a care team of specialists in pediatric orthopedic surgery, neurology, otolaryngology (ear, nose and throat), physical and occupational therapy, and special rehabilitation physicians called physiatrists. Our multidisciplinary approach assesses each child and clinicians collaborate to provide thorough, comprehensive care.

Shriners Children’s also provides genetic testing to help physicians and the family reach a diagnosis. Skeletal dysplasias are generally genetic conditions. A mutation (change or defect) in a specific gene causes changes from normal growth. They may be diagnosed on ultrasound during pregnancy or not apparent until the child begins to grow.

Specific treatments and services may vary by location. Please contact a specific location for more information.

There is such a broad spectrum of conditions, so it’s not as easy as just identifying a syndrome. You really need a multidisciplinary team to solve the complexities.
Dennis Roy, M.D., Shriners Children's Portland
patient outside in wheelchair, laughing

Searching for New Treatments and Care

Four Shriners Children's locations are part of a national Brittle Bones Research Consortium, studying osteogenesis imperfecta (OI), a rare disorder that causes bones to break easily. “We are enthusiastic about the opportunity to learn more about this rare disorder and share information through research and publications to improve care,” said Peter Smith, M.D., principal investigator at Shriners Children's Chicago.

Innovative Treatments

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Orthopedic Surgery

With their expertise in treating children from toddlers to teens, the pediatric orthopedic surgeons at Shriners Children’s understand the challenges of planning ahead for growing bones and bodies.

Next Steps

Request an Appointment

Families and caregivers seeking treatment should start by contacting us for an appointment.

Log in to the Patient Portal

Parents and guardians of existing patients can email, request records, schedule appointments and more.

Refer a Patient

Physicians and healthcare providers can request appointments, start transfers or contact us with questions.