My name is Kambri, and I’m 17 years old. I was diagnosed with Fanconi anemia when I was five. Before my diagnosis, I just didn’t feel good for a while. I had frequent nosebleeds, bruised easily, and was tired a...
Events
This virtual meeting is an opportunity for individuals diagnosed with Fanconi Anemia Neurological Syndrome (FANS) and their families to gather, share experiences, and find mutual support for navigating FANS. Registration is required and participants must speak English as interpretation is not available. Time: 5:00 - 6:30 pm Pacific Time
We are delighted to invite you to the upcoming FA Family Retreat, taking place at The Painted Turtle from June 21-25, 2025. The Family Retreat offers a unique opportunity for families registered with us to participate in presentations by leading researchers and physicians specializing in Fanconi anemia (FA). Attendees will...
The Retreat for Adults with FA takes place every fall in a different city. It’s an opportunity for individuals with FA ages 18+ to meet other adults with FA, learn about medical and research updates, attend support sessions, and participate in voluntary research studies. We are excited to continue providing...
The Latest
News & Events
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.
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.