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Bardet Biedl Syndrome Foundation

Connecting families and sharing information on research, treatment, and therapies for Bardet Biedl Syndrome.

The 2014 BBSFA Conference

The 2014 BBSFA Conference, June 26-28, 2014, will be bigger and better than ever before. The most obvious change is that we’ll be gathering at the University of Iowa in Iowa City this time. You can read more about our venue and hosts below.

Click here to register now, or read on for more info.

What may not be as obvious is that the conference will focus not only on BBS research, but we’ll have a whole day devoted to living with BBS. On Friday, our speakers will all be doctors and specialists who are working with a number of BBS patients and families. They’ll be sharing what they’ve learned about BBS psychology, adapting to vision loss, exercise and nutrition and many other topics. On Saturday we’ll be hearing from BBS researchers from several different research efforts (see the agenda below for our confirmed Saturday speakers).

In addition to our speakers, we’re also setting aside time for BBS families to interact with each other. You’ll be able to talk to other families who face similar issues or are at a similar stage to share ideas and support. Of course, we’ll also have updates on association projects, our banquet (including some special awards), and elections for association board positions.

All-in-all it will be a packed two days plus. The “plus” points to two other important parts of this year’s conference. First, the University of Iowa will have limited slots for visits with some of their specialists and genetic testing for families who don’t have a genetic diagnosis on Thursday before the conference. If you’re interested in learning more, send an email to Darla Mansker, BBSFA secretary at Second, the BBS Center of Excellence at the Marshfield Clinic will be holding clinic appointments before and after the conference. Marshfield, WI is about a six hour drive from Iowa City, so it will be relatively easy to combine visits. Spots on the clinic schedule are always in high demand, so if combining the conference with a visit to the Center of Excellence sounds appealing, be sure to contact Dr. Haws from Marshfield right away (

Conference Agenda

Here’s a quick look at the Conference Agenda:

Thursday: Arrive, appointments at University of Iowa, genetic testing and genetic samples


9:00 Welcome and Opening

10:00 to 12:00: Living with BBS Breakout Sessions (psychology, metabolism, nutrition and exercise, etc.)

12:00: Lunch with BBS Family Groups–meet other families like you

1:00 to 3:00: Living with BBS Breakout Sessions

3:00: BBS Center of Excellence

4:00: Ask the Doctors: A chance for you to ask your burning questions about living with BBS

6:30: Banquet: Meet BBS families in your area; Special Awards; Nominations for BBS Family Association board positions


9:00: BBS Research: Dr. Nico Katsanis, Dr. Elise Heon, Dr. Les Biesecker

11:00: BBS Registry

12:00 Lunch and BBS Family Association Board Elections

1:00: BBS Reseach: Dr. Arlene Drack, Dr. Bud Tucker, Dr. Val Sheffield

4:00 Ask the Researchers

Conference Speakers

Our Saturday agenda is packed with some of the leading researchers on BBS. Confirmed speakers include:

Dr. Nico Katsanis, Center for Human Disease Modeling, Duke University: Dr. Nico probably needs no introduction, but for those new to the community, he has hosted the last two association conferences. He has been a leader in BBS research since before any genes were identified, and has recently identified yet another gene.

Dr. Elise Heon, chief of pediatrics, Hospital for Sick Kids, Toronto: Dr. Heon spoke at our last conference (you can see a summary of her talk on our website). She has been busy in the meantime with BBS research not only on vision but on obesity.

Dr. Les Biesecker, National Institutes of Health: Dr. Biesecker leads the BBS research program at NIH and we’re excited to hear about developments there.

And of course, our hosts:

Dr. Val Sheffield, University of Iowa: Dr. Sheffield is another groundbreaking researcher on BBS, publishing groundbreaking papers on BBS genes, cilia and the underlying causes of the syndrome.

Dr. Arlene Drack, Wynn Institute for Vision Research, University of Iowa: Dr. Drack is an ophthalmologist and researcher who is perhaps best known for her work testing two different therapies for BBS-related vision loss, TUDCA and gene therapy in BBS3 mice. Watch a video of Dr. Drack describing her research here.