Fanconi Anemia

Our Goal

The Fanconi Anemia (FA) Citizen-Identified Projects are intended to enable FA patients, families, caregivers and advocates to share with researchers their personal insights and experiences about FA to help guide new research efforts. The first FA Project was launched in April 2012: a survey was posted here on BRIDGE, and members of the FA community were invited to respond. The response to the survey was one of the highest ever seen within the FA community! FA researchers are currently using the survey results (which you can look at too!) to identify those research areas that responders thought were most important.

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Transforming Your Insights To Research
 
Here Are How The INSIGHTS of those experiencing Fanconi Anemia will be transformed into new research efforts
April 2012 to June 30, 2012:  Over 150 members of the FA community filled out a survey that gathered their ideas on the key FA questions that need solving. As the survey proceeded, results were posted on BRIDGE so that all could see what relevant themes were “bubbling” up.
July 2012-August 2012:  FA researchers will use the survey data to identify the solvable challenges from those suggested and then define the resources and tools needed for each potential effort. The top research ideas will be posted on BRIDGE so that all can review the proposed projects and use the FA Community Forum to provide feedback.
September 2012-November 2012:  Once the top FA Challenge projects are identified, a call to action will go out on BRIDGE and throughout the FA Community for citizens, researchers and funders to step up with the data and funding needed to launch one or more of the FA community's top Challenge proposals.
End-2012:  After the first FA Challenge project launches, you will be able to track its progress here on BRIDGE. The project will leverage technologies that make it easy for citizen/FA patient data to be contributed to the research and for a bidirectional conversation between researchers and citizen-patients about the data to ensue. This first FA Challenge project will not only move researchers toward a better understanding of Fanconi Anemia: it will be one of the first examples of an open biomedical research project, with citizen-patients actively involved at all stages of the effort and with researchers incentivized to share data in real time.

 

Discover the Current Faconi Anemia Survey Totals

Fanconi Anemia Survey Response Statistics

123

respondents

6465

questions answered
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Learn more about the current state of Fanconi Anemia research

Fanconi Anemia Current Research

What's New?
More News
Brief Report: Patients With Fanconi Anemia and AML Have Different Cytogenetic Clones Than De Novo Cases of AML
by long-time FA researcher Blanche P. Alter, MD, MPH, FAAP and others.
04/01/2012
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Find out more and about how you can help
 

Get Involved

I want to get involved in the Fanconi Anemia Challenge projects or help fund the efforts.
I want to donate my data and/or join the Fanconi Anemia research effort 
I want to donate money to the Fanconi Anemia Challenge Projects

Get Connected

Below you can learn more about how the Fanconi Anemia Research Foundation is leading the efforts to understand and treat Fanconi Anemia.
 
Fanconi Anemia Research Fund
Lynn and Dave Frohnmayer started the Fanconi Anemia Research Fund, Inc. in 1989 to find effective treatments and a cure for Fanconi Anemia and to provide education and support services to affected families worldwide.
Learn More
 

 

Individuals and groups working to improve the lives of those with Fanconi Anemia
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Wynand van der Merwe
Fanconi Anaemia South Africa
Fanconi Anaemia South Africa started soon after the passing of my wife, Madeleine, who had Fanconi Anaemia. The purpose is to raise awareness and a...
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Giovanni Pagano
MSc, Cancer Research Center, CROM, Mercogliano, Italy
Parent of a late FA patient; FA researcher
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Lei Li
Professor, M. D. Anderson Cancer Center
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Bhuvanesh Singh, MD
Director, Cancer Epithelial Biology, Memorial Sloan-Kettering Cancer Center, New York
Scientific Advisory Board Member for the Fanconi Anemia Research Fund
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Jakub Tolar, MD, PhD
University of Minnesota Medical School, Dept. of Pediatric Hematology-Oncology, Minneapolis, MN
Scientific Advisory Board Member for the Fanconi Anemia Research Fund
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Stephanie Griggs
parent of an 8 y.o. daughter with Fanconi Anemia - A.
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