Bardet-Biedl syndrome (BBS) is a genetic disorder that can affect many parts of the body. This includes altered weight regulation, vision loss, kidney abnormalities, the presence of extra fingers or toes, and developmental differences. Features of BBS can vary, even among family members with the same underlying genetic cause.
The Bardet-Biedl Syndrome Program is multidisciplinary and was developed to provide the best possible comprehensive care for patients with Bardet-Biedl syndrome and their families.
Why Choose Lurie Children's?
The Bardet-Biedl Syndrome Program at Lurie Children’s brings together specialists in kidney disease (nephrology), genetics, glands & hormones (endocrinology), nutrition, and eye surgery & vision care (ophthalmology) - all with specialized interests in caring for children with BBS.
Our team is dedicated to supporting and advocating for both the physical and emotional needs of children and their families. We strive to provide personalized, patient-centered care to help families navigate and enhance every aspect of life for children with BBS.
The medical management of a child with BBS can be complex, and families often find themselves coordinating care across multiple specialties. Our clinic was created to support children and families throughout their BBS journey by reducing the burden of fragmented care and providing a compassionate, multidisciplinary approach to the diagnosis, treatment, and long-term management of BBS.
Our Specialists
Gal Finer, MD, PhD
Nephrologist
Kelly Regan-Fendt, MD, PhD
Geneticist
Jaime Duncan, MS, CGC
Genetic Counselor
Reema Habiby, MD
Endocrinologist
Safa Rahmani, MD
Ophthalmologist
Jennifer Rossen, MD
Ophthalmologist
Kyleen Schilling, APRN-NP, CPNP-PC
Pediatric Nurse Practitioner
Sarah Ward, BSc
Clinical Care Coordinator
What to Expect
Patients will see a geneticist and nephrologist during a single visit. We will also assist you in scheduling appointments with our dedicated BBS team members from endocrinology, ophthalmology, and nutrition.
We will ask questions about your child’s medical, surgical, and family history. Our team will explain the next steps we recommend, such as medical imaging or baseline screenings. There may also be additional team members present, such as medical trainees
Make an Appointment
Call the Division of Nephrology directly to schedule an appointment.
Questions? For more information, please call our Clinic Genetic Counselor, Jaime Duncan at 312.227.7697.