Please contact our clinic at kleefstrasyndromeclinic@childrens.harvard.edu or call 617-355-3645. We will help determine which specialists are most appropriate for your child to see. We will then ask that you provide your child’s medical records so we can best prepare for your child’s visit.
The following medical records are required before your child’s appointment:
- Neurology clinic notes
- Genetics clinic notes
- Full reports of EHMT1 genetic testing or chromosomal microarray analysis (not just a summary)
Other suggested records:
- Neuropsychological assessments
- Report of your child’s most recent brain MRI and EEG
- Echocardiogram
- Renal ultrasound
Medical records can be sent to:
RSZ Translational Neuroscience Center
Boston Children’s Hospital
BCH3468
ATTN: Brynn Heslin
2 Brookline Place
Brookline, MA 02445
Fax: 617-730-0288
The length of a visit with the Kleefstra Syndrome Clinic will depend on the number of specialists scheduled. Your child will see each of the necessary specialists separately and sometimes in different buildings. For more information about preparing for your visit, please see our patient resources pages. For additional support navigating a visit to Boston, please contact the Hale Family Center for Families.