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Fabry Disease Patient with Heart Failure Receives Transplant

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Latest Research

A recent study by McCarron et al. (2025) analyzed real-world health outcomes in adults with Fabry disease, a genetic disorder causing fat buildup that damages organs. The study used a cross-sectional design to capture a snapshot of patient health, likely examining complications such as kidney, heart, or nerve issues and identifying common challenges or treatment patterns.

Although specific results were not detailed, such analyses often reveal gaps in care and factors influencing disease severity. These insights can guide improved management strategies for this rare condition, addressing unmet needs in patient monitoring and treatment effectiveness. The study highlights the importance of understanding disease progression in everyday clinical settings.

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Community News

National Fabry Disease FoundationNational Fabry Disease FoundationApr 21, 2025

Hi everyone,

April is Fabry Disease Awareness Month, and we're celebrating by sharing Fabry facts every weekday.

Did you know about our resource, "Tips from the IV League," created with input from Fabry community members who receive intravenous (IV) enzyme replacement therapy (ERT)?

The National Fabry Disease Foundation surveyed families with Fabry disease to learn how they make the best of receiving ERT.

The document, “Tips from the IV League,” is available on our website to help individuals manage their treatment. (Note: at the time of this distribution, our website is temporarily down.)

https://tinyurl.com/FabryIVLeague

Thank you to all of the community members who responded to our survey and shared their treatment tips and tricks!

Contact us by email at [email protected] or by phone at 800-651-9131.

The NFDF Team (Jerry, Casey, and Hannah)

National Fabry Disease Foundation Post
Fabry Support & Information GroupFabry Support & Information GroupApr 16, 2025

Fabry Awareness Month reminds us that while each of our journeys may be unique, none of us have to walk them alone. Every voice matters. Every story deserves to be heard.

When we stand together, no story is too rare to be heard. 💙

Let’s keep raising awareness, supporting one another, and reminding the world that our community is stronger together.

Fabry Support & Information Group Post
Fabry International NetworkFabry International NetworkApr 16, 2025

Dr. Ulla Feldt-Rasmussen: A leading voice in Fabry Disease research and care, championing innovation in Denmark and Europe #FabryHero

Fabry International Network Post

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Fabry Get Together with Dr. Goker-Alpan In Person Fabry Support & Information Group • Concordia, MO