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2008 NUCDF Family Conference DVD Now Available

The 2008 Family Conference DVD is a video of the conference speaker presentations and includes:
- Keynote Address—“Improving the Future—Advancing Clinical Research
for UCDs”
Mark Batshaw, M.D. Geneticist, Developmental Pediatrician, Children’s National Medical Center, Washington, D.C., Rare Disease Clinical Research Centers Urea Cycle Disorders Consortium (UCDC).
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“UCD Longitudinal Study—What are We Learning and Where Could it Lead?”
Mendel Tuchman, M.D., Geneticist, Children’s National Medical Center; Primary Investigator, Rare Disease Clinical Research Centers UCDC.
- “MRI Imaging Studies—Learning How UCDs Affect Brain Function”
Andrea
Gropman, M.D., Neurologist, Children’s National Med Ctr, Washington, D.C
- “Keys to Stability Part I—Nutritional Management for UCD”
Debra Geary-Hook, MPH, RD, Metabolic Dietician/Clinic Coordinator,
UC Irvine Metabolic Team Center, Irvine, CA
- “Keys to Stability Part II—A Team Approach to Managing UCDs”
Irma Payan, MSN, CNS, PNP, Children’s Hospital of Philadelphia, Division of
Genetics and Metabolic Disease
- “My Journey with OTC—Insights for Parents and Healthcare Professionals”
Amy Lang, Adult with OTC Deficiency, Fairport, NY
- “Improving Outcomes—Updates in Urea Cycle Disorder Treatment and Management”
Brendan Lee, M.D., Ph.D., Geneticist, Baylor College of Medicine, Houston, TX
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This valuable DVD is available for only $27.00, including shipping
and handling.
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At the 2005 NUCDF Conference in Houston and over the past five years we have learned so much about UCDs and acquired many great strategies from the NUCDF team that continually help us with our son who has Citrullinemia.
Thank you all for your resolute dedication to our cause. The impacts of the NUCDF and its outstanding research teams have been indispensable our family. Hopefully our feedback can help you know the information that is valuable to us.
T.B., USA |
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