What To Expect

Scheduling an Appointment
To make an appointment:  734-764-0579

We currently have clinic appointments twice per month on Thursdays in Ann Arbor at the C.S. Mott Children's Hospital. We also have Outreach Clinics 4 times per year in Marquette and 2 times per year in Traverse City, Michigan.

Things Needed to Schedule an Appointment
  • Patient's name, DOB, demographics, health insurance
  • Referral from patient's primary care provider (our clinic staff will assist you in obtaining this)
  • Reason for visit (Interested in Fragile X testing? Known or suspected diagnosis of Fragile X/FXTAS/FXPOI? Family hx Fragile X syndrome? etc.)
  • Fragile X test report (if applicable)
  • Medical records (if available prior to the appointment)
  • Request for coordinating an appointment with other Fragile X Clinic providers, if interested

What to Bring to Your Appointment
  • Health insurance cards
  • Outside medical records 
  • Fragile X test reports if Fragile X syndrome has already been diagnosed in your child or in another member of your family
  • List of current medications
  • List of your questions 

What the Appointment will look like

All patients with an interest in the University of Michigan Fragile X Clinic will be triaged by the Pediatric Genetics Clinic to determine which doctors should see the patient. For patients traveling from a significant distance, there may be availability to coordinate appointments with more than one doctor on the same day. Patients who do not have a diagnosis of Fragile X syndrome and have no family history of Fragile X-related conditions will be referred to our regular Pediatric Genetics clinic for evaluation.

At the first appointment in our Fragile X Clinic, a detailed discussion of the patient's condition and detailed questions related to family history as well as related symptoms or conditions will be obtained. This appointment will also be a major point for education for the families and for possible enrollment in clinical research. Depending on the findings and initial assessment, patients will then be referred out to secondary providers if needed. 

On roughly an annual basis (this time frame is flexible), patients will return to Fragile X Clinic to assure appropriate coordination of their care.  

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Contact Information
 To make an appointment call: 734-764-0579
Fax: 734-763-6561