News

FA Connect | Breaking Down Myths and Stigmas of Grief

Come meet Lori Krause, FCF Bereavement Group facilitator, certified life coach focusing on grief and loss, and end-of-life doula with experience facilitating groups in the rare disease space. In this virtual session, she will discuss some of the most common...

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FA Connect | All Kinds of Grief

In the FA community, we may experience grief at the loss of members of our FAmily, grief about parts of our lives that are different than we expected, and anticipatory grief about the losses we predict may occur. Join fellow...

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Retreat for Adults with FA

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...

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Annual Family Retreat

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...

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FA Connect | Living with Uncertainty

A common phrase in the FA community is "I'm just waiting for the other shoe to drop." Living with this amount of uncertainty can take a toll. Join fellow FA caregiver, Allison Breininger, for a group discussion about what it's...

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