The world’s first rare disease registry for Bardet-Biedl Syndrome was launched at Marshfield Clinic Research Foundation at the end of June, 2014. To date, nearly 100 people from across the country have signed up to participate in the Clinical Registry Investigating BBS (CRIBBS). Funds are needed to ensure all of these interested individuals are able to enroll into the registry.
Realizing the future potential for BBS patients, members of the Bardet-Biedl Syndrome Family Association from across the country have rolled up their sleeves and are helping generate philanthropic support for CRIBBS. The first of volunteer fundraiser events will take place in Minneapolis, MN on September 22 and the second in Atlanta, Georgia on October 23. Proceeds from both of these events will support CRIBBS at MCRF.
Bring Light to BBS – Minneapolis: https://www.facebook.com/events/1462075820710171/
Donation page: http://cribbs.kintera.org/BringLight2BBSmpls
Bring Light to BBS – Atlanta: https://events.r20.constantcontact.com/register/eventReg?oeidk=a07e9s4lkodd16769e6&oseq=&c=&ch
Donation page: http://cribbs.kintera.org/BringLight2BBSatlanta
A video promo for the Minneapolis event is available here: http://www.youtube.com/watch?v=OM4-5271kUQ