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Introduction 11 FA is a psychosocially demanding disorder. • The pressures on the patients, parents and siblings over an extended time can be overwhelming, particularly where there are multiple affected family members. • Patients, families and providers must be sensitive to issues of expense, the sophistication and availability of medical and family counseling, and the significant and continuing emotional trauma resulting from this diagnosis. The underlying diagnosis and the many drugs often necessary for treatment may put FA patients at particular risk for hazardous pharmaceutical crossreactions. • The family and primary physician must continuously coordinate and monitor prescribed and over-the-counter medications taken by a patient. The authors recognize that a significant proportion of affected families seek out and utilize “alternative” medicine. • We accept this approach but at the same time ask families to be open in discussing what they are doing. Effective therapies may emerge and need to be shared. However, we also caution that unforeseen toxicities and drug interactions need to be identified. We commend these guidelines in the profound hope that they will better serve the lives of patients afflicted with this serious and life-threatening disorder. We welcome comments that may inform future improvements in care and treatment.
12 Fanconi Anemia: Guidelines for Diagnosis and Management Dave Frohnmayer President and Professor of Law University of Oregon Co-founder, Fanconi Anemia Research Fund, Inc. Vice President, Board of Directors Eva Guinan, MD Moderator, Consensus Conference Associate Director, Center for Clinical and Translational Research Dana-Farber Cancer Institute Medical Director, Harvard Catalyst Laboratory for Innovative Translational Technologies Director, Harvard Catalyst Linkages Program Associate Professor of Pediatrics Harvard Medical School Jeffrey M. Lipton, MD, PhD Chief, Pediatric Hematology/Oncology and Stem Cell Transplantation Schneider Children’s Hospital Professor of Pediatrics Albert Einstein College of Medicine Investigator and Professor, Elmezzi Graduate School of Molecular Medicine The Feinstein Institute for Medical Research
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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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