Tuesday, November 15, 2016

What is BBS anyway?

BBS stands for Bardet-Biedl Syndrome.  It is a rare genetic disorder with symptoms that include retinal degeneration, obesity, polydactyly (extra digits of the hands and/or feet) and can lead to renal degeneration in some cases.  It affects approximately 2,500 people in the United States.

While there is no cure for BBS at this time, the families affected have worked earnestly to help the research expand and progress. Through the efforts of the Marshfield Clinic, an organization dedicated to helping those with BBS, a clinical registry has been established which has already begun to serve as a very important tool to help researchers in their quest find answers about how to combat BBS issues.  

I love this video the BBS community has put together to explain the importance of the clinical registry (and to show some of the faces of BBS children). 


For more detailed information about the registry click HERE.

For more in depth information about BBS, click HERE.

To check out the family association on Facebook, click HERE.

And to meet a few of the great BBS kids fighting (along with their families) to find answers to help with their health issues, keep scrolling.










Because of generous donations of so many, these kids and hundreds more have hope for their future.  

So do their families.  

And that means the whole world.