Fabber. Have you ever heard that term? It’s used to describe those with Fabry disease. I recently spent a weekend with my family and fellow “Fabbers.” I had many takeaways from this family camp weekend, but one of the highlights was…
Columns
I was amazed by all of the support available to us at the beginning of our treatment journey. We received phone calls to make sure we were managing our appointments and insurance paperwork. We got reminder emails and envelopes full of information in the mail. Our doctor and nurse…
Columns
The Start of the Journey
Welcome to Morgan Yontz’s “Chronically Caring,” a new Fabry Disease News column. The first step I first learned of Fabry disease when my aunt tested positive after years of suffering without diagnosis. The diagnosis was bittersweet for her. She finally had validation that something major was causing her so many…
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- Despite disease symptoms, long delays seen for a Fabry diagnosis in children
- Fabry Awareness Month focuses on community, strength, and support
- Finding my tribe at FSIG’s recent Fabry community get-together
- New monthly dosing of Elfabrio approved in EU for some Fabry patients
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- FDA grants orphan designation to new Fabry cell therapy GT-GLA-S03
- Sangamo seeks accelerated US approval of gene therapy for Fabry