Over the past 3 years we have partnered with COMBINEDBrain to collect BBSOAS bio samples (e.g. blood), to be used for research projects.
Our goal as a foundation is to collect as many BBSOAS samples from our community as possible. The more we collect, the better our chances to learn more about BBSOAS. If you have donated a sample already, we really want a repeat sample - this allows scientists to study the progress of BBSOAS.
Dates and locations
San Antonio, TX March 19th-20th
Orlando, FL April 9th-10th-
NR2F1 Family & Scientific Conference
Ellicott City, MD April 17th-18th
Denver, CO June 13th-14th
Orlando, FL June 18th-19th
Concord, NC June 24th-25th
Ann Arbor, MI June 26th-27th
Boston, MA June 27th-28th
Asheville, NC July 14th-15th
Bethesda, MD July 17th
Philadelphia, PA July 17th-18th
Boston, MA July 18th
Galveston, TX July 20th-21st
Boston, MA October 8th-9th
Philadelphia, PA October 9th-10th
Austin, TX November 7th
Houston, TX November 11
Denver, CO December 3rd-4th
Ready to participate?
Email Amanda.Reiser@nr2f1.org Amanda will get you registered and share next steps. Then on the day you simply walk into the designated hotel and follow the signs to the collection room.
Frequently Asked Questions
What is a biorepository?
A biorepository is a facility that collects, catalogs, and stores samples of biological material (e.g. blood samples) for laboratory research.
Why are biorepositories important?
Did you know the research and medical community use samples from biorepositories for research studies? We want to make sure BBSOAS is represented in as many studies as possible and that means having samples from our community readily available. For a disorder like BBSOAS there is potentially more variability than some other disorders due to the range of phenotypes and the genetic variants, so we need as many as possible. We have also used a lot of what we've previously collected, in research studies.
If I have participated in the past, should I do it again?
YES!! Repeat samples from the same donors create longitudinal samples - ie the progress of BBSOAS over time. Researchers and pharma companies are especially interested in these repeat samples.
I don't live near these locations, can I still participate?
We know families around the world want to participate. For now, we can only collect biorepository samples in the United States at the locations listed. But we are working on this and will let you know once we have a solution to collect in other countries.
This year we are not able to organise any 'at home' collections.
Will the biorepository be at the 2026 BBSOAS Family & Scientific Conference?
Yes! If you are attending in person we will be reaching out to you to have you register in advance
How much does it cost to provide a sample at these locations?
It’s FREE!