Programs & Services

Fragile X is a family of conditions associated with changes in the Fragile X gene. Fragile X syndrome is the most common cause of inherited intellectual disability, affecting one in 3,600 people, and can cause autism spectrum disorder in boys.

Fragile X also affects other members of the family besides the child, causing primary ovarian insufficiency in women and Fragile X tremor/ataxia syndrome in adults older than 50.

Our Fragile X Clinic is on the first Tuesday of every month. Appointments are made by a referring pediatrician or family physician and generally take longer than a routine doctor's appointment. All new patients need referrals from their Primary Care Physicians (PCP) — we want the PCP involved in all aspects of the child's care.

Due to the thorough evaluation by the team, an appointment may include appointments with physical therapy (PT), occupational therapy (OT) and speech in the morning followed by a visit with our Developmental Pediatrics and Genetics Departments in the afternoon. In addition, your child may be referred to other specialists for further evaluation.

Each child in our Fragile X Clinic is seen by a developmental pediatrician or nurse practitioner, as well as a genetics specialist. Most patients are also evaluated by someone in rehabilitation services, including:

• Speech therapists
• Occupational therapists
• Physical therapists

A program coordinator also works with each family. You’ll also have access to a virtual team of other medical sub-specialty providers at Phoenix Children’s and in the community and resources dedicated to working with children with Fragile X syndrome and their families.

Please bring the following information to your child's first appointment: 

• Medical history form
• Behavioral history form 
• Old medical records
• School evaluation reports
• Individualized Education Plans (IEP)
• Therapy reports
• Genetic testing