Each clinic is approximately three to four days and takes an innovative approach to improving care for patients with BBS.
Our providers understand BBS and are interested in meeting the needs of patients and families it affects.
Pediatric BBS clinics may include:
- Cardiology
- Child psychology
- Community resources
- Dental
- Dermatology
- Endocrinology
- Gastroenterology
- Medical genetics
- Nephrology
- Neurology
- Neuropsychology
- Nutrition
- Occupational and physical therapy
- Ophthalmology
- Otolaryngology (Ear-Nose-Throat)
- Physical medicine and rehabilitation
- Speech pathology and audiology
- Sleep medicine
- Speech therapy
Adult BBS clinics may include:
- Cardiology
- Community resources
- Dental
- Dermatology
- Endocrinology
- Gastroenterology
- Gynecology
- Medical genetics
- Nephrology
- Neurology and sleep medicine
- Neuropsychology
- Nutrition
- Occupational and physical therapy
- Ophthalmology
Patients and families meet with a team of specialty providers, including a social worker, who helps identify local, state and national resources for BBS.
On the final day of the clinic, a BBS team member will meet with you to review the overall information answer any questions you have.
Follow-up care
On your first visit, you will receive a binder to organize all physician notes and recommendations as well as contact information for each provider you were evaluated by. On later visits, the notes will be sent to you to add them to your binder.
CD copies of all provider notes and radiology scans are sent to you, as well as the primary health care provider. A comprehensive care plan and recommendations are also sent outlining major points of the evaluations and specific individualized recommendations.
This complete summary with recommendations is vital to ongoing care. Many local providers that see you might not have another patient in their practice with this diagnosis.
The additional information and recommendations assist them in providing optimal local care. Follow-ups are recommended on an annual or bi-annual basis.
Appointment schedule
Depending on the patient’s specialty care needs, patients and families may have three to seven appointments with various specialty care providers each day of the BBS clinic. There is built in time for breaks between the appointments.
Opportunities to network
Patients and families have opportunities to connect throughout the BBS clinic.
Upon arrival at Marshfield, you will be met by staff members who will be participating in your care throughout your time at the clinic.
A dinner gathering may be hosted for patients and families at some point during your visit, providing an opportunity to share information with other BBS families and learn more about BBS resources available.
Insurance coverage
Marshfield contracts with many insurance plans and networks. Please check with your employer or insurance company to see if you have access to health care services with us. We will work with your health insurance company to complete prior authorization when it is required.
2025 dates
2025 dates to be announced soon
Self-referral
Patients and families may self-refer to the BBS clinic or primary care providers can make the referral.
Clinical Registry Investigating Bardet-Biedl Syndrome
The Clinical Registry Investigating Bardet-Biedl Syndrome (CRIBBS) is the largest worldwide registry examining the long-term health of individuals with BBS. The mission of CRIBBS is to promote research that will improve the health and quality of life of individuals affected by BBS.
Learn more about CRIBBS >
