FCF Initiatives

Research that connects discovery with care

FCF funds research to better understand FA, improve care, and develop safer ways to prevent, detect and treat cancers associated with the disease.

Progress depends on more than any one study. We connect researchers and clinicians, support shared data and research materials, and work with people affected by FA to understand which questions matter most.

Graphic: See how studying FA drives scientific progress.

Cancer research is a central priority. People with FA face a high risk of cancer, and some standard treatments can cause serious harm. FCF supports work to prevent cancer when possible, detect it earlier and develop safer treatments.

We also support research into:

  • Gene therapy and gene editing to address the underlying causes of FA.
  • Bone marrow failure to improve understanding, prevention and treatment.
  • Other effects of FA on health and quality of life throughout life.
  • Data and shared research resources that help investigators work together and move discoveries forward.

Working Together For A Cure

Cancer

FCF brings researchers and clinicians together to study how cancers develop in people with FA and how to improve prevention, screening and treatment. Through the Fanconi Cancer Consortium, teams share expertise, samples and findings across projects. Their work includes oral cancer screening, studies of changes that may precede cancer, cancer prevention research and the development of treatments better suited to people with FA.

Research Innovations

Gene Therapy and Gene Editing

Gene therapy and gene editing research seeks to address the DNA repair problem at the root of FA. Researchers are studying ways to improve blood and bone marrow health and exploring whether these approaches could eventually help other tissues affected by FA. This work is at different stages of development, from laboratory studies to clinical research.

Creating Access

FRIENDS Data Project

Because FA is rare, information collected by different research teams is especially valuable when it can be studied together. The FRIENDS Data Project brings institutions and FA experts together to develop shared data standards and make research data more useful across studies. This work can help researchers investigate cancer, bone marrow failure and other questions that matter to the FA community.

The Voices of FA

Community Partnership

People affected by FA bring knowledge that research data alone cannot provide. Their experiences can help researchers understand unmet needs, choose meaningful study questions and consider what progress would look like in daily life. FCF creates opportunities for individuals with FA and caregivers to share their perspectives and help shape research and care.