Preparing for Your Leukodystrophy Center Appointment

Scheduling appointments or referring a patient to the Leukodystrophy Center

To schedule an appointment with CHOP’s Leukodystrophy Center, call 215-590-1719 or contact us online. Please include your child’s full name, date of birth and diagnosis if known, as well as a note about any other specialists you think your child may need to see.

Once we review your request, you will likely be asked to fill out our referral survey. These additional details will help us arrange the most effective evaluation for your child.

A note for providers: Please feel free to share this referral survey link — — directly with your patient if you’re recommending they seek an evaluation at the Leukodystrophy Center.

What to expect at your visit

Appointments are scheduled so patients see the relevant members of the Leukodystrophy Center team in one day and in one location. This may include a neurologist, metabolic doctor, rehabilitative medicine physician, endocrinologist, Pediatric Advanced Care Team, complex care pediatrician, physical therapist, occupational therapist, speech therapist, and a nutritionist.

If your child would benefit from seeing any additional specialists beyond the Leukodystrophy Center team, we will try our best to arrange an appointment for that specialty during the week you are traveling to CHOP for your appointment.

Appointments are typically held on the second Thursday of each month. A typical visit starts at 8:30 a.m. and ends around 2:30 p.m.

Depending on your child’s specific needs, you may be here longer if additional testing is needed or you have volunteered to participate in research.

One of the many benefits of having your child’s care coordinated through our Leukodystrophy Center is that you are in the same room all day and doctors rotate so that you do not need to move about the hospital. You also have access to our nurse and social worker who are dedicated to the Leukodystrophy Center and knowledgeable about the needs of your child and family.

If you have questions about insurance, FMLA, nursing support, medication administration, or anything else, please ask to speak with our nurse or social worker during your visit, and they would be happy to work with your family!

After your child has seen the entire team, we meet to discuss your child’s health and create a care plan specifically designed for your child for you to take home at the end of that day. 

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