Support & Education

Start From the Beginning

What is Fanconi Anemia?

Fanconi anemia (known as FA) is a complex disease that can affect every system of the body, and the severity of symptoms can differ widely from person to person. A diagnosis of FA has social, emotional, and financial impacts on the individual and family, as well. Being educated and supported throughout the process of diagnosis, and into treatment and management, is paramount to well-being and coping with a chronic disease.

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Stay Informed

Resource Library

Explore our library of educational materials and videos to empower individuals and families impacted by FA. Gain insights, guidance, and understanding to navigate FA’s complexities with more confidence.

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Find Your Family

Gatherings

FCF hopes to offer a place where anyone in the FA community can gain support and connection among others who have lived with FA and its associated cancers. FCF hosts annual gathering opportunities including our FA Family Retreat and the Retreat for Adults with FA to foster important relationships for individuals and families to connect, educate, and empower one another.

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You're Part of the Story, Too

Caregiver Support

We understand that an FA diagnosis impacts the entire family, extending beyond the individual affected by it directly. As a caregiver to someone with FA, you play a crucial role in their journey. Our aim is to support you by offering valuable education, connection, and caregiver specific support opportunities, to ease the challenges associated with caring for someone with FA.

A Global Community

International Support

Though the Fanconi Cancer Foundation is based in the United States, individuals with FA live on every continent. In an effort to recognize and respond to the global reach of this disease, we are pleased to partner informally with a number of international FA groups, as well as provide grants to support international community impact efforts.

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In This Together

Grief Support

During times of loss, seeking support and solace can be vital. FCF offers a caring community for those navigating the complexities of grief. Explore resources, including grief support groups, to accompany you in this experience. Whether you’re in need of comforting resources or the companionship of others who understand, we’re here for you.

Join Our Family Support Group

“This group has a wonderful amount of knowledge to share & will send you positive vibes when you lack strength. It’s a wonderful outlet for questions, information, love, and support throughout the journey.”
—FA Parent

Signing up with FCF gives you access to educational materials, resources, support services, and community, including a private Facebook group. All information and services are free, and your information is kept confidential.

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The Latest

News & Events

Nine Newly Funded Research Grants Support Next Steps in FA Care

Czechowicz lab at Stanford Promising research needs continued support to answer the next question. A laboratory finding may need testing in more models. A screening study may need years of follow-up. An approach ready for a clinical study needs the...

New Findings, Next Steps: Research Highlights From the 2026 FA Scientific Symposium

How can we prevent cancer in people with FA? How can treatments become safer? At the 2026 FA Scientific Symposium in Phoenix, researchers shared progress toward answering these questions, alongside work to protect blood-forming cells and better understand the broader effects of FA. Some approaches are entering clinical studies. Others are helping researchers decide which ideas deserve further testing.

Honoring Lynn Frohnmayer’s lifetime of commitment to the FA community

More than four decades ago, Lynn Frohnmayer was a mother searching for answers after learning that three of her five children had Fanconi anemia. There was no roadmap and no established network of families or experts. Information was scarce, treatments were limited, and the future her family had been given was devastating.