The Clinical Registry Investigating Bardet-Biedl Syndrome (CRIBBS) is critical to improving our understanding of BBS. Your help is needed to help maintain and grow the registry, which was created entirely through philanthropic support.
Each participant in the registry costs $400 per year. A gift of that size allows a patient with BBS to take part in an initial interview covering all aspects of their BBS symptoms or provide updated information about their journey with BBS. The interview information, along with lab results, genetic tests, medical imaging, and doctor visits will all be added to the registry and updated annually.
With each new participant and each new piece of data added to the registry, researchers will be able to better understand BBS and help find ways to help those with BBS live longer and without debilitating complications. You can help us create a brighter future for those living with BBS.
To make a gift to BBS Initiatives at Marshfield Clinic, contact Teri Wilczek at firstname.lastname@example.org.
To learn more about fundraising for BBS, contact Matt Faber at email@example.com.