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2007 NUCDF Family Conference was a great success!
The NUCDF Family Conference was held July 6 - 8 at the
Grand Hyatt Washington
NEW - View Conference Pictures
2007 Family Conference DVD available for purchase
| Friday, July 6, 2007 |
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| 6:30 pm - 9:00 pm |
WELCOME RECEPTION for all conference participants. This is an opportunity for parents, family members and physicians to meet each other and exchange information in an informal setting. Children are also invited to attend. Complimentary hors d’oeuvres and refreshments will be served. |
| Saturday, July 8, 2006 |
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| 7:30 am - 8:00 am |
Continental Breakfast |
| 8:00 am - 8:10 am |
Welcome – Opening Remarks, Mark Batshaw, M.D., Children’s National Medical Center, Washington, D.C. |
| 8:10 am - 9:00 am |
Keynote Address – “Advancing on the Rare Disease Research Road” Stephen C. Groft, Director, Office of Rare Diseases, National Institutes of Health |
| 9:00 am - 9:45 am |
“Urea Cycle Disorders Consortium Update – UCD Longitudinal Study and Expanding Research” Mark Batshaw, M.D., Geneticist, Developmental Pediatrician, Children’s National Medical Center, Washington, D.C., Primary Investigator for Rare Disease Clinical Research Centers for UCD |
| 9:45 am - 10:00 am |
Break |
| 10:00 am - 10:45 am |
“The New Horizon – Studying the Effects of UCD on Brain Function” Andrea Gropman, M.D., Children’s National Medical Center, Washington, D.C. |
| 10:45 am - 11:45 am |
“Improving Outcomes – New Insights in Urea Cycle Disorder Treatment and Management” Brendan Lee, M.D., Ph.D., Geneticist, Baylor College of Medicine, Houston, TX |
| 12 noon - 1:00 pm |
Luncheon Buffet |
| 1:00 pm - 1:30 pm |
“Living with UCD – Insights for Parents and Healthcare Professionals” Emily Rohrer, OTC Deficiency, Canton, OH |
| 1:30 pm - 2:30 pm |
“Understanding Nutritional Management for UCD” Debra Geary-Hook, MPH, RD, Metabolic Dietician/Clinic Coordinator, UC Irvine Metabolic Team Center, Irvine, CA |
| 2:30 pm - 2:40 pm |
Break |
| 2:40 pm - 5:00 pm |
Irma Payan, CRNP, Metabolic Nurse Practitioner/Newborn Screening Coordinator, Children’s Hospital of Philadelphia, “Managing Intercurrent Illness at Home.” |
| 3:45 pm - 5:00 pm |
Workshop Sessions: “Keeping Kids Stable – Managing Common Illness at Home,” “Behavioral Issues and UCD,” “Lo-Pro Cooking for Parents and Kids,” |
| 5:00 pm |
End of Saturday Conference Session |
| Sunday, July 9, 2006 |
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| 8:00 am – 9:30 am |
Continental Breakfast - |
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M., Citrullinemia, Arizona, USA |
"This weekend was a real eye-opener for me. I thought I knew a lot about OTC, but was I wrong! This conference is so valuable, not only with regard to medical research. I will never miss another one. Just being with other parents who have gone through what I have and much more was good for my soul—to talk with others who knew what I was going through....the love and support was incredible." S.R.
Thank You to Our Sponsors
Platinum Sponsors
PerkinElmer Life Science
Ucyclyd
Silver Sponsors
Vitaflo
Ross Metabolics
Exhibitors
Cambrooke Foods
Applied Nutrition
Conference DVD production — Thank you to Shelley Wilson for her excellent work and professionalism.
Shelley Wilson
Log Cabin Studios
Hollywood, MD
www.infinivisionproductions.com
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