Sponsored through an educational grant from BIOMARIN

Managing PKU at Any Age

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The PKU diet can be difficult to follow at any age. For children, and those going through adolescence, "fitting in" becomes a factor. PKU patients who are pregnant deal with constant changes and extra special care for a growing fetus. Older patients are still relatively new to PKU care, as adult clinics are scarce. In this Patient Power program, hear from experts on treating this disease at any age and how you can be prepared for your future. Learn about the daily challenges of those living with PKU and how to best protect your health as you age.

Listen to the Conference Coverage from the recent International Teen and Adult PKU conference held in Chicago in August 2008. This marked the largest ever assembled group of PKU patients and family members ever!

Richard K. Koch, M.D. Professor of Pediatrics Emeritus University of Southern California, (USC) Keck School of Medicine Dr. Richard Koch is Professor of Pediatrics Emeritus, University of Southern California (USC) Keck School of Medicine. He graduated from medical school in 1951 at the University of Rochester in New York. He spent his professional career at the Children's Hospital of Los Angeles, part USC. Dr. Koch has specialized in the treatment of PKU for over 50 years.Dr. Koch reports that he was on the BioMarin Advisory Committee for 2 years (2001-2003). He has received funding for four research projects from the National Institutes of Health (NIH) for galactosemia and PKU. More Info

Laura Pickler, M.D. Clinical Genetics and Metabolism Children's Hospital of Colorado Dr. Laura Pickler is a board certified family physician with an active primary care practice serving children, youth, and young adults with special health care needs. She also has completed two fellowships in Child Development and Clinical Genetics and Metabolism and additionally provides consultative care in these fields. This training has poised her to take a lead role in implementing medical homes for children and adults underserved in the community. She understands first hand the challenges of providing comprehensive, coordinated care that creatively works with diverse family dynamics. In addition to her clinical expertise, Dr. Pickler has prior experience in public health as well as academic research. She is also the faculty sponsor for the University of Colorado School Of Medicine Developmental Disabilities Interest Group and featured speaker in the third year medical student curriculum. More Info

Monica Giovanni, M.S.,C.G.C. Genetic Counselor, Adult Genetics Service Brigham and Women's Hospital Monica A. Giovanni is a genetic counselor for the Adult Genetics Clinic at Brigham and Women's Hospital and the Harvard-Partners Center for Genetics and Genomics. In this role, she provides counseling and support for individuals with diagnosed genetic conditions, individuals with a family history of genetic disease, and preconception counseling for individuals planning pregnancy. Her clinical interests include the care of patients with Adult and Maternal PKU, Marfan syndrome and related disorders of connective tissue, and Neurofibromatosis. More Info

Listen to Coverage from the recent International Teen and Adult PKU conference held in Chicago in August 2008. This marked the largest ever assembled group of PKU patients and family members ever!

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Living Better with PKU (Fall Series) Survey

We hope the information you received here has helped you to better manage PKU for you or a loved one.

To continue to develop programming that is responsive to your needs, we need input from you. Your responses to this Living Better with PKU (Fall Series) will tell us how well we've succeeded so far and how we can improve.

The survey is less than 25 questions and can be completed in just a few minutes. The information will be used only in aggregate and none of the responses will be indentified with an individual. We will ask only for your ZIP code and other basic information.

Thanks for taking the survey. Patient Power looks forward to developing future programs for the PKU community, and we hope you will be in the audience.

Notice: Patient Power, LLC is solely responsible for the content of webcasts and replays and transcripts on this site. Information here is for educational purposes only. Please check with your own doctor for medical advice that is right for you.