The Indiana University Marfan Syndrome Program
The Kathryn L. Ober Marfan Syndrome Clinics
We are pleased to offer the only clinics in Indiana devoted to Marfan syndrome and staffed by board certified medical geneticists. We are dedicated to serving the unique needs of individuals and families with a known or suspected diagnosis of Marfan syndrome. We provide experienced and knowledgeable personnel familiar with the medical issues associated with Marfan syndrome.
Specialists in cardiology, cardiovascular surgery, ophthalmology, orthopedics, and obstetrics work in conjunction with our medical geneticists to provide the essential multidisciplinary care needed by those with Marfan syndrome. Appointments with members of our comprehensive team may be arranged following an evaluation in one of the Marfan Syndrome Clinics.
An appointment in our clinic may last from 1-2 hours and include the following:
- Diagnostic evaluations through detailed analysis of family history and physical examination
- Ongoing follow-up care to provide medical management, monitor symptom progression, and address emerging concerns
- Discussion of physical activity guidelines
- Coordination of medical care with other specialists familiar with Marfan syndrome
- Genetic counseling for patients and their families
- Genetic testing, if appropriate
- Education and resources
Marfan Syndrome Clinic Appointments
The Marfan Syndrome Clinic, located at Riley Hospital for Children at IU Health in Indianapolis, is staffed by medical geneticists, Drs. David D. Weaver and Wilfredo Torres, and several experienced genetic counselors. Appointments for children and adults may be scheduled by calling 317-944-3966
Preparing for an Appointment
Prior to the appointment, please ask your referring physician to send pertinent medical records including any recent echocardiograms or ophthalmology examinations. Medical records may be faxed to 317-278-0936.
Family history is an important consideration with Marfan syndrome. Please gather information in advance of the appointment about any health problems in relatives, especially heart and vision, as well as height.
Preauthorization by a primary care physician is required by many health insurance plans.