Education
Family Support Services offered by the Fanconi Anemia Research Fund include providing education to FA patients, their families and treating physicians about the genetic cause, the many possible effects of FA and the various treatments for FA. Information is provided through our publications, the Annual Family Meeting, Meetings for Adults with FA, Regional Meetings, participation in the online support groups and through consultation with our Director of Family Support Services.
Publications which families can use for reference include the following:
- Fanconi Anemia: Guidelines for Diagnosis and Management (2008) (full book)
To view the electronic versions of this publication in pdf format, Adobe Reader is required. (Download a free copy of Adobe Reader).
The Guidelines for Diagnosis and Management book is now available on CD. Each CD contains both an English and a Spanish version of the book. If you would like to receive a CD, please contact us. - Anemia de Fanconi: Lineamientos para diagnostico y manejo, Tercera edicion (2008) (Please note that this file will take a few moments to load.)
- Family Newsletter
- Treatment and Testing Resource Guide
- FA Courier
- Fanconi Anemia: A Handbook for Families and their Physicians (Third Edition, 2000)
This handbook is also available in Spanish and French:
Anemia de Fanconi: Un Manual Para Las Familias y sus Medicos (Tercera edicion, 2000)
Anemie de Fanconi: Manuel pour les familles et leur médecin (Troisième édition, publiée en mars 2000) - SCC Fact Sheet to share with Dentists and ENTs
View chapters and components of the Guidelines for Diagnosis and Management separately below:
Cover
Front Matter
Table of Contents
Introduction
Chapter 1: Clinical Management Checklist
Chapter 2: Diagnostic Evaluation of FA
Chapter 3: Treatment of Hematologic Abnormalities in FA
Chapter 4: Gastrointestinal, Hepatic, and Nutritional Problems in FA
Chapter 5: Hand and Arm Differences in FA
Chapter 6: Gynecologic and Fertility Issues in Female FA Patients
Chapter 7: Endocrine Disorders in FA
Chapter 8: Hearing and Ear Abnormalities in Fanconi Anemia
Chapter 9: Matched Sibling Donor Hematopoietic Stem Cell Transplantation
Chapter 10: Unrelated Donor Hematopoietic Stem Cell Transplantation
Chapter 11: Late Effects in Fanconi Anemia Patients Post-Transplant
Chapter 12: Novel Treatment Options
Chapter 13: Head and Neck Squamous Cell Carcinoma in FA Patients
Chapter 14: The Adult FA Patient
Chapter 15: Genetic Counseling
Chapter 16: Psychosocial Issues
Chapter 17: Mother’s Perspective: The Grieving Process and the Physician’s Role
Appendix: Participants and Contributors
Glossary
Index
To receive a hard copy of the Guidelines book please contact us with your request and contact details. Please specify whether you would like the English or Spanish language version.
The National Institutes of Health, National Institute of Dental and Craniofacial Research publishes an excellent reference entitled Detecting Oral Cancer: A Guide for Health Care Professionals, which may be helpful to FA Patients.
In addition, the Fund sponsored Carcinogenesis in the Mucosal Linings of the Head and Neck, a video production by Ruud H. Brakenhoff, PhD, Vrije University, Department of Otolaryngology/Head and Neck Surgery.
