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Fanconi Anemia Research Fund and NORD Launch Natural History Study of Fanconi Anemia
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Fanconi Anemia Research Fund and NORD Launch Natural History Study of Fanconi Anemia

Sep 18th, 2019

Research study is open to participants worldwide to advance understanding and treatments for the rare disease Fanconi anemia.

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Topics: Announcements


Expeditions

Expeditions

By: Robin Lewis | Nov 6th, 2019

I’d like to tell you about a journey that changed my life forever. FA has taught me a couple of life lessons that you would expect to hear from a man late in his 90s.

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Topics: Stories

A Day at the 2019 FAdult Meeting with Mary-Beth

A Day at the 2019 FAdult Meeting with Mary-Beth

By: Mary-Beth Johnson | Oct 18th, 2019

At the FAdult Meeting in Chicago, Mary-Beth (a blogger & adult with FA), took over FARF's Facebook for a day and brought viewers behind the scenes at the meeting.

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Topics: Stories

A Pursuit in Genetics

A Pursuit in Genetics

By: Anne Starner | Oct 9th, 2019

This summer, I had the honor of working in Dr. Alan D’Andrea’s lab at the Dana-Farber Cancer Institute in Boston. The people who research our disease are just as amazing as the people who have it.

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Topics: Stories

How Our Family Channeled Grief Into Hope

How Our Family Channeled Grief Into Hope

By: Zachary and Rachel Gratz-Lazarus | Aug 13th, 2019

Well before her diagnosis of FA, our daughter was a model in resiliency for us. When she was finally born, we called her Mighty Mouse. Small, but resolute. Our model of resilience. Our Norah.

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Topics: Stories

A Mother’s Appeal

A Mother’s Appeal

By: Nancy Nunes | May 20th, 2019

As Duncan's mom, I wish I could give him more days. I’d give him mine if I could. But that’s not possible. I can only resolve to give some of my time to try to raise funds for research.

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Topics: Stories

Adulting with Fanconi Anemia

Adulting with Fanconi Anemia

By: Jasmine Bennetsen | Mar 19th, 2019

We first learned something was wrong in 2004. I was a normal, healthy kid until I went to my pediatrician for my 13-year-old booster shot and blood draw. That was the first sign something was off.

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Topics: Stories