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Publications

The Fanconi Anemia Research Fund is dedicated to providing meaningful, up-to-date publications to help educate affected families and clinicians about FA. Available publications include:

  •  FA Family Newsletter - The Fanconi Anemia Research Fund publishes the FA Family Newsletter twice per year. The Newsletter contains articles on FA-related research, scientific information about FA, and stories of families coping with FA
  • FA Courier - The FA Courier helps to connect the FA community to current FA-related research projects. The FA Courier is published annually. The FA Courier:

         outlines the process for submitting much-needed research samples to aid in the fight against FA
         lists current research projects and clinical trials seeking participants from the FA community
         informs scientists/researchers of available research samples and materials

  •   Fanconi Anemia: Guidelines for Diagnosis and Management - These guidelines came out of a Consensus Conference held by the Fanconi Anemia Research Fund in 2013. This publication is for physicians who provide primary care for FA patients, as well as patients and families who wish to develop a more comprehensive medical understanding as they work to secure optimal treatment through consultation and appropriate referral. The guidelines are also available in Spanish, Italian, French, and Korean.
  •  SCC Fact Sheet - Regular screenings for oral cancer are critically important for FA patients.To help you communicate the urgency of this issue with health care professionals, we've prepared two flyers -- one for dentists and one for ear, nose and throat doctors (ENTs).The flyers include specific instructions about how to conduct a thorough oral cancer screening exam. We recommend that you take a flyer with you to every visit with your ENT physician and dentist. You can request color copies from our office or download the files in a variety of languages here.
  • Hormone Therapy in Fanconi Anemia - by Susan R Rose, University of Cincinnati School of Medicine, Cincinnati Children’ s Hospital Medical Center, Division of Endocrinology, Cincinnati, OH, USA, published as "Expert Opinion on Orphan Drugs" on informahealthcare.com.

To request a hard copy of a publication, please contact us.

of note

Applications for the Executive Director are now closed.. learn more...

The Fund would like to welcome four new members to the Board of Directors. learn more...

It is with profound sorrow that we announce the loss of Amy Frohnmayer Winn... learn more...