guidebook. - Fanconi Anemia Research Fund

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Fanconi Anemia Guidelines for Diagnosis and Management Third Edition • 2008 Editors: Mary Ellen Eiler, Dave Frohnmayer, JD, Lynn Frohnmayer, MSW, Kim Larsen, and Joyce Owen, PhD Layout and Design: Melanie Fee These guidelines for the clinical care of Fanconi anemia (FA) were developed at a conference held April 10-11, 2008 in Chicago, Illinois. We owe a tremendous debt of gratitude to Eva Guinan, MD, for serving as moderator of the conference, as she did for the consensus conferences for the first two editions, and for her skill in helping the participants arrive at consensus. We would like to thank all the participants for donating their time and expertise to develop these guidelines. The names and contact information of all participants appear in the Appendix. These guidelines are posted on our website and are available from: Fanconi Anemia Research Fund, Inc. 1801 Willamette Street, Suite 200 Eugene, Oregon 97401 Phone: 541-687-4658 or 888-326-2664 (US only) FAX: 541-687-0548 E-mail: info@fanconi.org Website: www.fanconi.org Material from this book may be reprinted with the permission of the Fanconi Anemia Research Fund, Inc.
iv Fanconi Anemia: Guidelines for Diagnosis and Management The Fanconi Anemia Research Fund, Inc., was founded in 1989 to provide support to FA fami lies and to raise money for scien tific research. The Fund publishes a newslet ter twice a year, sponsors an annual family meeting, and provides resource identification and counseling support to families. To aid research into FA, the Fund gives grants to scientists and sponsors scientific conferences, including an annual scientific symposium. Board of Directors Barry Rubenstein, JD, President David Frohnmayer, JD, Vice President Ruby Brockett, Secretary/Treasurer Deane Marchbein, MD Kevin S. McQueen Peg Padden Mark K. Pearl Kevin Rogers Robert D. Sacks Michael L. Vangel Peter H. von Hippel, PhD Joyce L. Owen, PhD, Director Emeritus Advisor to the Board Lynn Frohnmayer, MSW Staff Jeanne Negley, Executive Director Teresa Kennedy, Family Support Coordinator Melanie Fee, Publications Coordinator Kristi Keller, Administrative Assistant and Bookkeeper Kim Larsen, Grant Writer and Conference Coordinator Scientific Advisory Board Grover C. Bagby, Jr., MD, Chair Manuel Buchwald, PhD, OC, Emeritus Joseph Califano, MD Marc Coltrera, MD Richard Gelinas, PhD Eva Guinan, MD Hans Joenje, PhD Christopher Mathew, PhD Stephen Meyn, MD, PhD Raymond J. Monnat, Jr., MD Elaine Ostrander, PhD Bhuvanesh Singh, MD, PhD Erich M. Sturgis, MD, MPH Neal S. Young, MD
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Chapter 4 Gastrointestinal, Hepatic
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Chapter 7 Endocrine Disorders in Fa
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Chapter 9 Matched Sibling Donor Hem
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Chapter 12 Novel Treatment Options
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Chapter 13 Head and Neck Squamous C
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Chapter 14 The Adult Fanconi Anemia
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