What does IFAR mean in UNCLASSIFIED

Fanconi anemia is an inherited blood disorder that can lead to bone marrow failure, birth defects, leukemia, and other health problems. It affects both males and females and is caused by a mutation in one of at least 14 genes which regulate DNA repair functions.

IFAR provides resources for those affected by Fanconi anemia, including access to research data, treatments trials and protocols, family support services, educational materials, advocacy initiatives, and more.

Joining IFAR is free and simple! Just visit fanconiregistry.org/apply to fill out a short form with your contact information. Once you submit your application you will be sent additional paperwork that needs to be signed by both yourself and a medical provider related to your diagnosis. After completing all steps you'll officially become part of the registry!

IFAR collects data on individuals with Fanconi anemia such as demographic information (e.g., age at diagnosis), medical history (e.g., treatments received), current health status (e.g., symptoms reported), family history (e.g., siblings affected or not), genotype information (i.e., gene mutation responsible for Fanconi anemia), test results from laboratory tests, etc.

Through its website fanconiregistry.org/help-support/, IFAR offers members personalized assistance through their Patient Support Program which includes counseling services for patients and families as well as financial aid options for eligible individuals or families who are struggling financially due to their illness or need assistance navigating insurance plans or accessing care providers.