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

Ryan’s Story: The Impact of Research, Support, and Community

When Ryan was diagnosed with Fanconi anemia (FA) at 18 months old, it was devastating. There were so many unknowns, and trying to gather information online was both frustrating and scary. When we found the Fanconi Cancer Foundation (FCF) and...

Living with Faith and Possibility

For our family, living with FA means living with faith. We see Liam as a normal, healthy child who continues to grow and surprise us. At the same time, we know there are real challenges.

Speaking Up for Rare Disease Communities

Advocacy efforts play an essential role in building stronger systems of care for rare diseases. By elevating the experiences of families and engaging policymakers, organizations such as the Ivan & Joan Foundation are helping move rare disease awareness and care forward in their communities.