Newly Diagnosed

Just diagnosed?

You likely have many questions and may not know where to start. You may feel overwhelmed with emotions and uncertainties. But please know you’re not alone in this. We’ve pulled together vital information, support, and resources to help guide you. Read at your own pace and come back when you need. You’re in the right place.
My (my loved one’s) diagnosis is Fanconi anemia, but this organization is called Fanconi Cancer Foundation. Is this disease cancer?

While “Fanconi anemia” is the name of the disease, it’s important to understand that FA is a condition characterized by genetic issues affecting DNA repair. This leads to a heightened risk of cancer. A diagnosis of FA doesn’t automatically mean that you or your child has cancer. However, it does indicate a significantly increased risk of developing cancer, typically occurring in adulthood. At the Fanconi Cancer Foundation, we are working to eliminate the threat of cancer for individuals with FA.

Start With the Basics

What is Fanconi Anemia?

Fanconi anemia (known as FA) is a complex DNA repair disease that can affect every system of the body, and the severity of symptoms can differ widely from person to person. The most common manifestations are bone marrow failure and cancer. While there is no cure yet, we’ve made incredible progress in research and outcomes for people with FA.

Get Care

Find FA Experts

Because FA is a rare disease, we recommend that whenever possible, people with FA be cared for at centers that specialize in it. We’ve compiled a list of doctors experienced with treating this disease.

You're Not Alone

Connect With Others With FA

Although it’s a rare disease, there are many other individuals and families living with FA. You’re among a community that is navigating similar challenges as you and can offer validation and knowledge about their experiences with care, support, and resources.

Find Hope

Read Stories From the Community

Check out our community blog, where individuals and families share their heartfelt stories and experiences. Find comfort, inspiration, and validation as you read about the journeys of others navigating life with FA. Whether you’re seeking hope or simply a sense of belonging, our blog is a place where you can find solace and connection.

Learn Here

Explore Support and Education

We’re here to support you and your loved ones, alongside your medical team, by offering education, connection, and resources to navigate this diagnosis with strength and resilience. You don’t have to face FA alone – you have a community behind you, every step of the way.

Join us at the upcoming #FCFSymposium and FA Adult Retreat September 19- 22 in Charlotte, North Carolina.
This is default text for notification bar