Bardet Biedl Syndrome Family Association

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

2016 BBSFA Conference Agenda

June 24-25, 2016
Duke University, Durham, NC
Closest Airport: Raleigh/Durham International Airport (RDU) 
A shuttle from the airport to the hotel and back will be available on Thursday, Saturday evening and Sunday morning for a nominal fee.

To register click here.

Agenda


Note this agenda is subject to change.

Friday, June 24th

9:00am Welcome

Dr. Nico Katsanis, Dr. Erica Davis, Tim Ogden

9:10am Plenary: The BBS Foundation and Family Association: Past, Present and Future

Speaker: Tim Ogden, President, Bardet Biedl Syndrome Foundation

10:00am Plenary: CRIBBS: Past, Present and Future

Speaker: Dr. Bob Haws, Marshfield Clinic

10:50am Break

11:00am Plenary: BBS Research at the University of Iowa

Speaker: Dr. Kamal Rahmouni, University of Iowa

12pm Lunch

1:00pm Plenary: Investigating Weight Management in BBS

Speaker: Dr. Jeff Pomeroy, Marshfield Clinic

2:00pm Plenary: BBS Research: Past, Present and Future

Speaker: Dr. Nico Katsanis, Duke University

3:00pm Break

3:15 Breakouts: Ask the Doctors (and Lawyer)

Dr. Haws (Nephrology) and Dr. Rokey (Cardiology): BBS Management

Dr. Katsanis: Understanding BBS Research

Dr. Davis: Understanding Gene Therapy and Stem Cell Therapy

Planning for the Future: Special Needs Trusts and Guardianship

4:15pm Breakouts: Ask the Doctors (and Lawyer)

Dr. Haws and Dr. Rokey: BBS Management

Dr. Katsanis: Understanding BBS Research

Dr. Davis: Understanding Gene Therapy and Stem Cell Therapy

Planning for the Future: Special Needs Trusts and Guardianship

 

6:00pm Banquet

 

Saturday, June 25th

9:00 Plenary: What You Can Do to Advance BBS Research and Treatment

Speaker: Victoria Babb

10:00 Breakouts: BBS Life

College and Career: Joy Ravenel and Mike Halm

Raising a Boy with BBS

Raising a Girl with BBS

Speech Therapy

Fundraising Workshop

11:00 Understanding BBS Genes and Proteins

Speaker: Dr. Erica Davis, Duke University

12:00 Lunch

1:00pm Vision Research at the Foundation Fighting Blindness

Speaker: Dr. Stephen Rose, Foundation Fighting Blindness

2:00pm Breakouts: BBS Life

Mental Health for BBS Adults

IEPs

What it Takes to Be a Parent of a Child with BBS

Fundraising Workshop

3:00pm Breakouts: BBS Life

Coping with Vision Loss

Newly Diagnosed Families: What Now?

What it Takes to Be a Parent of a Child with BBS

Fundraising Workshop

4:00pm Plenary: Ask the BBS Adults

Speakers: Ellyn Hunter, Tom Marker, Marty Knight

4:50pm Closing

 

Please direct all registration inquiries to: Mary Morris