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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


Nunca más huérfana

Nunca más huérfana

By: Sharon Schuman, PhD | Mar 5th, 2019

La Anemia de Fanconi se consideraba una enfermedad huérfana por lo poco frecuente y lo poco que se conocían sus causas, sus conexiones a otras enfermedades, y sobre la existencia de tratamientos.

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Topics: Stories

 FARF co-founder speaks at 30th Symposium

FARF co-founder speaks at 30th Symposium

Jan 14th, 2019

Lynn Frohnmayer, FARF co-founder, has lost all three daughters to Fanconi anemia. At the 30th FA Scientific Symposium, she spoke about her family's story and three decades of progress in FA research.

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Topics: Stories

Heart of Celebration

Heart of Celebration

By: Mary-Beth Johnson | Jan 7th, 2019

Mary-Beth Johnson is a foodie and fantastic cook, a wife, sister and daughter, and a self-proclaimed over-sharer. She also lives with Fanconi anemia.

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Topics: Stories

The Sibling Journey

The Sibling Journey

By: Nancy Cincotta, LCSW, MSW, MPhil | Dec 7th, 2018

What is it like to be the sibling of someone with Fanconi anemia? How is life as a sibling influenced by FA?

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Topics: Stories

Ask the Adults: Advice for the Younger FA Generation

Ask the Adults: Advice for the Younger FA Generation

By: Jack Timperley | Nov 14th, 2018

Adults with FA answer the questions of children with FA and their parents.

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Topics: Stories

Let’s Meet at the Porch?

Let’s Meet at the Porch?

By: Marcos Teixiera | Oct 23rd, 2018

A Brazilian family's FA diagnosis and journey to Family Camp

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Topics: Stories