Wolfram Syndrome Clinic
Director: Fumihiko Urano, MD, PhD
Nurse Navigator: Ashley Raterman, RN
Email: WolframSyndrome@wustl.edu
Phone: 314-477-1527
Clinical Trial Nurse Coordinator: Stacy Hurst, BSN, RN, CDE
Phone: 314-747-3294
Located at WashU Medicine’s Center for Advanced Medicine, the Wolfram Syndrome Clinic is dedicated to improving clinical care for individuals affected by Wolfram syndrome and related disorders. These include:
- Classic Wolfram Syndrome
- Ashkenazi Jewish subtype of Wolfram Syndrome (WFS1 c.1672C>T, p.Arg558Cys)
- Autosomal dominant Wolfram-related disorders (also referred to as Wolfram-like disorders)
We provide comprehensive consultations and care services, including:
- Genetic evaluations and counseling
- Patient and family education
- Personalized management plans for individuals of all ages—whether diagnosed or suspected of having Wolfram-related conditions
Our multidisciplinary team includes adult and pediatric specialists experienced in Wolfram syndrome and its spectrum. These include neurologists, neuro-ophthalmologists, endocrinologists, urologists, psychiatrists, and medical geneticists. Together, we deliver coordinated, patient-centered care.
We strive to schedule appointments either on the same day or within two consecutive days to ensure timely care. Our clinic serves both pediatric and adult patients.
The Wolfram Syndrome Clinic has been recognized as a Rare Disease Center of Excellence by the National Organization for Rare Disorders (NORD).
Schedule an Appointment with our Wolfram Syndrome Clinic:
If you’re in Missouri, please call Ashley Raterman, RN, Nurse Navigator, at 314-477-1527.
Let her know that you or your family member has Wolfram syndrome or Wolfram-related medical conditions and need to make an appointment. Once we review your medical records, Dr. Urano or his staff will contact you to discuss which specialists you may need to see.
Sending Medical Records via Fax
Please fax your medical records to 314-747-7065.
Referrals via Fax for both Missouri patients and out-of-state patients
Please fax your referral request to 314-747-7065.
If you’re out of state, please call Ashley Raterman, RN, Nurse Navigator, at 314-477-1527.
Let her know that you or your family member have Wolfram syndrome or Wolfram-related medical conditions and need to make an appointment. Once we review your medical records, Dr. Urano or his staff will contact you to discuss which specialists you may need to see.
Sending Medical Records via Fax
Please fax your medical records to 314-747-7065.
Referrals via Fax for both Missouri patients and out-of-state patients
Please fax your referral request to 314-747-7065.
International patients are welcome to contact our international patient care office to schedule an appointment by calling +1-314-273-3780 or sending an email to Internationalpatients@wustl.edu or WolframSyndrome@wustl.edu
Sending Medical Records via Fax
Please fax your medical records to 314-747-7065.
Referrals via Fax for both Missouri patients and out-of-state patients
Please fax your referral request to 314-747-7065.
Interested in Research Studies
If you’re interested in participating in clinical research studies related to Wolfram syndrome, you can get in touch with our research nurse coordinators, Stacy Hurst, RN, CDE and Ashley Raterman, RN, by sending an email to wolframsyndrome@wustl.edu. Visit the registry here.
Washington University Medical Center is recognized as a Rare Disease Center of Excellence, with excellent specialists committed to providing exceptional care.