Expert, coordinated care for children and adults
Marshfield Clinic offers comprehensive evaluations and individualized treatment recommendations through our dedicated multispecialty BBS clinic. Patients can self-refer and we work with your insurance to help ensure coverage.
How to schedule (self-referral welcome)
- Call: (715) 389-3235 to discuss your needs and start scheduling
- Referral form: Download and return the Bardet-Biedl syndrome referral questionnaire (PDF)
- Insurance and prior authorization: We contract with many plans and will work with your insurance to complete prior authorization when require
Who we care for
- Children and teens: With suspected or confirmed BBS, especially when vision changes, extra digits at birth, growth or endocrine concerns, or learning differences are present
- Adults: With BBS who need coordinated follow up for eye health, kidney function, metabolic care, sleep, cardiovascular screening and everyday support
Signs and features of BBS
BBS varies from person to person. Diagnosis is based on clinical features seen over time:
- Primary features may include: Obesity, polydactyly (extra fingers or toes), urinary tract abnormalities, learning disabilities, cone-rod dystrophy and hypogonadism
- Secondary features may include: Speech delay, strabismus, astigmatism, cataracts, short fingers or toes, developmental delay, excessive thirst and urination, gait imbalance and spasticity, diabetes, dental crowding and high palate, hepatic fibrosis and congenital heart disease
Learn more
Patient stories
Mikyla Mobley
Hello everyone my name is Mikyla Mobley. I was diagnosed with BBS when I was about 15. I had already been diagnosed with retinitis pigmentosa (RP) when I was 13.
Reed Smith
We received Reed’s official BBS diagnosis at 10 months old. Our feelings about Reed’s diagnosis began with disbelief and denial, then progressed into guilt, worry, despair, envy, jealousy and then more guilt.
Ellyn Hunter
We define ourselves in the roles we have. I am a wife, mom, grandma, sister and a psychotherapist. I live in Madison, Wisconsin with my husband, Jim. We have been married for 32 years.
Kristina Constant
I am 35 and have Bardet-Biedl syndrome. I live alone and work in Boston as a legislative aide for a state representative. I help constituents with issues, answer emails, work with state agencies and answer phones for the representative.
Frequently asked questions
What is Bardet Biedl syndrome?
A rare, inherited disorder present from birth affecting many body systems, including vision, metabolism, kidney, endocrine, and neurocognitive function.
How is BBS diagnosed?
Clinicians use established criteria that includes either four primary features or three primary plus two secondary features observed over time.
Can I self refer?
Yes. Call (715) 389-3235 or submit the referral questionnaire to begin.
Will my insurance cover the clinic?
Marshfield contracts with many plans and will work with your insurer on prior authorization if needed.
What specialties will I see?
Depending on age and needs, visits include coordinated appointments across ophthalmology, nephrology, endocrinology, cardiology, neurology and sleep, genetics, nutrition, therapies and more.
What happens after the clinic?
You’ll receive a summary binder, provider notes, imaging, and a personalized care plan; we recommend annual or biannual follow-ups.