This daylong workshop presents a number of novel service delivery mechanisms. The first half of the day will focus on systems models for service delivery, while the second half of the day will focus on case examples of various models. All presentations are meant to provide frameworks to stimulate discussion and provide opportunities to share successes and lessons learned. Although each speaker will present a specific experience, discussion will focus on the potential for wide application of these models.

9:00-9:20
Family Health History for the Duke Employee Community by Julianne O’Daniel

9:20-9:25 — Questions

9:25-9:45
Equal Access: Providing Genetic Services to Families Living Away from Urban Centers by Sylvia Au

9:45-9:50 — Questions

9:50-10:10
Cultural Competency to Provide Quality Care for Patients and Their Families by Martha Carvalho

10:10-10:40 — Break

10:40-11:40
Panel discussion: The Medical Home by Renee Turchi, Molly Gatto, and Deb Walker

11:40-12:30 — Morning questions and comments

12:30-1:30 — Lunch

1:30-1:50
Promoting Caregiver Well-Being Among Parents Raising a Child Diagnosed with Smith-Magenis Syndrome by Sarah Elsea

1:50-1:55 — Questions

1:55-2:15
Development of Care Management Recommendations for DMD: A Framework for Rare Disorders by Carolyn Constantin

2:15-2:20 — Questions

2:20-2:40
Improvement of Sickle Cell Knowledge After Education by Kusum Viswanathan

2:40-2:45 — Questions

2:45-3:15 — Break

3:15-3:35
Periodic Paralysis: Identifying Orchids by Linda Feld

3:35-3:40 — Questions

3:40-4:40
Panel discussion: Rare Disorder Partnership Successes: The U.S. Hemophilia Model by Judith Baker, Val Bias, and Diane Aschman

4:40-5:20 — Afternoon questions and comments