Osteogenesis Imperfecta Clinic

Our goal is to improve the lives of those affected by OI by maximizing wellness and independence. We individualize care to meet your child's specific needs and always meet one-on-one during your appointment, including consultations with:

• A geneticist and nurse practitioner manage and assess your child’s ongoing medical needs, including adaptive functioning and emotional health. They also coordinate care with the treatment team, which includes your child's primary care doctor. 
• A pediatric orthopedic surgeon will assess your child’s bones, joints and spine, providing surgery as needed using the latest techniques, including Fassier-Duval telescopic rods.
• Our dietitian who will discuss the importance of nutrition to maximize bone health, avoid obesity and ensure proper bowel function. 
• Our physical therapist who will evaluate and recommend activities to maximize strength and bone health as well as provide guidance regarding protective positioning, when needed.
• A social worker for help with the emotional and social aspects of living with OI, as well as insurance issues and coordinating special services.
• A licensed genetic counselor to discuss genetic testing and genetic counseling.
• A clinical nurse coordinator to serve as your primary contact, tracking your child's care, coordinating referrals and helping with paperwork.

Osteogenesis imperfecta (OI) refers to genetic conditions which alter the integrity of a specific type of collagen. Collagen is an important structural component in the body, weaving throughout bone to provide support and strength. All types of OI have an effect on collagen that leads to weakened bones and an increased risk of fractures. Altered collagen also has the potential to impact other organs and systems, such as the heart, lungs, eyes, teeth and hearing.