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

Finding Confidence and Joy as a Teen With FA

Our son Blake is 14 years old and eight years post bone marrow transplant. While we celebrate milestones, it’s important to remember that the transplant did not cure his Fanconi anemia. It gave him something incredibly valuable, more time, but FA is still part of his life.

The Sky Is the Limit

When I was 20 weeks pregnant, my doctor recommended an amniocentesis so we could find out what was causing concerns during my pregnancy. They took amniotic fluid for testing, and that's when my husband and I learned our daughter had a rare genetic disorder called Fanconi anemia (FA). We found out that we were both carriers, something we had never known.

A Place to Connect, Grow and Belong

The Family Retreat offers families a break from appointments, treatment decisions and everyday responsibilities. Children can try new activities and grow in confidence while caregivers learn, share practical support and connect with one another. The relationships formed at camp often continue long after everyone goes home.