Press & Media

About Fanconi Anemia and FCF

Fanconi anemia (known as FA) is a genetic DNA repair disease that can affect every system of the body. In people with FA, cells have less ability to repair themselves and as a result, errors in these cells will increase over time, causing cancer and often bone marrow failure. The Fanconi Cancer Foundation (FCF) is the leading organization worldwide dedicated to curing this disease. Our mission is to improve the lives of people affected by Fanconi anemia and associated cancers worldwide by funding exceptional research and empowering our community.

This Is Us

In this short video, you’ll hear from individuals with FA, caregivers, scientists, and advocates who are shaping a future full of discovery, connection, and hope. We fund research, support those living with FA, and collaborate with the world’s leading scientists and clinicians to move from rare disease to real impact.

Key Facts

  • Fanconi anemia, or FA, is a rare, inherited DNA repair disorder that significantly increases the risk of cancer, often at young ages.

  • Individuals with FA face a dramatically higher lifetime risk of head and neck, gynecologic and other solid tumors, and many cannot safely receive standard DNA-damaging cancer therapies.

  • The Fanconi Cancer Foundation was founded in 1989 by parents Lynn and David Frohnmayer to accelerate research and improve care for families affected by FA. All three Frohnmayer daughters have passed from complications of FA.

  • FCF has invested more than $35 million in research worldwide.

  • FCF prioritizes multi-institutional, collaborative research efforts focused on cancer prevention, early detection and safer treatment strategies.

  • Current initiatives include research exploring chemoprevention and improved cancer detection approaches, gene editing, advocacy, and infrastructure and systems to accelerate treatments.

  • FCF partners with leading institutions and national organizations, including the American Association for Cancer Research and the American Cancer Society, to raise visibility for FA and support emerging investigators.

  • Through advocacy, FCF ensures lived experience helps shape research priorities, clinical trial design and standards of care.

  • FCF provides trusted clinical guidelines, educational resources and global community support to individuals with FA, caregivers and clinicians.

  • FCF’s work bridges rare disease and cancer research, advancing discoveries that inform both FA care and broader understanding of DNA repair and cancer biology.

Media Resources

Access our collection of media resources to support your coverage of the Fanconi Cancer Foundation:

Are you an FA community member looking to share your story with the media? We can help!

Testimonials and Impact Stories

Read inspiring quotes and stories from families and leaders that highlight the impact of our work.

Media Contacts

For media inquiries, please reach out to:
Sherri Van Ravenhorst, Communications Director
Email: sherri@fanconi.org

The Latest

News & Events

2025 Research Updates

Research is the answer to one day making FA a treatable, manageable disease. Here, you'll discover the most recent strides in FA research and activities funded by FCF. Every quarter, we'll bring you updates on newly funded grants, ongoing projects, and significant milestones.

Read More >

Walking Beside My Daughter Through Fanconi Anemia

What I hope for most is a cure. And until then, I hope for Paige and others with FA to live lives as close to normal as possible, filled with opportunity, independence, and happiness.

Read More >

Tara Fought FANS with Grace and Courage; She Finished the Race

Fear and sadness are embedded with Fanconi anemia (FA), yet I have always tried to have a hopeful tone to my essays thinking of the effect on the families who read it. This one is no different. I lost my gutsy 24-year-old daughter Tara in September. She was created by God for purpose. I always told her she brought out the best in people.

Read More >