Education

Family Support Services provided by the Fanconi Anemia Research Fund include education to FA patients, their families, and treating physicians about the genetic causes and effects of FA and state of the art life-extending or life-saving treatments. Information is provided through publications, the Annual Family Meeting, Regional Meetings, and through consultation with our Family Support Coordinator.


Genetic counselor Heather Zierhut gets some assistance from adult FA patients at the 2009 Adult FA Meeting

Publications which families can use for reference are the following:

Treatment and Testing Resource Guide
FA Family Newsletter
FA Science Letter
FA Courier
FA: A Handbook for Families and their Physicians
FA: Guidelines for Diagnosis and Management

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.
(This is a brochure in pdf format.)

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.
(This video is viewable through QuickTime Player or Windows Media Player. It may take several minutes to load. If you prefer, email teresa@fanconi.org to receive the video on CD ROM).

 

Fanconi Anemia Research Fund, Inc. Fanconi Anemia Research Fund, Inc.