Fabry Disease News

10/12/2025

Fabry disease isn’t one-size-fits-all. It can present differently depending on age, gender, and genetics. https://bit.ly/3Yb8Jml

Early detection and awareness can make a big difference. If you or someone you know has symptoms or a family history, consider talking to a genetic counselor or doctor.

09/12/2025

🔍Early detection of Fabry disease can change the whole trajectory—for diagnosis, treatment, and outcomes. https://f.mtr.cool/pxuzmetaxk

Read the article above to explore how diagnosis works, what tests are involved, and why women and children are often underdiagnosed.

04/12/2025

One-time infusion with ST-920 improved kidney function and stabilized heart function in people with Fabry disease, trial data showed. https://buff.ly/w2LlSSw

One-time infusion with ST-920 improved kidney function and stabilized heart function in people with Fabry disease, trial data showed.

03/12/2025

For those living with Fabry disease—and their loved ones—here’s some encouraging news: https://bit.ly/49n1gYt

A new case study reports that Enzyme Replacement Therapy (ERT) helped preserve or improve heart function in patients who had already suffered kidney failure (on dialysis or after transplant).

While every individual’s journey is different, this finding brings hope that ERT might offer meaningful cardiac benefits even at advanced stages of disease. 🩵

01/12/2025

📬 Looking for real stories, trusted advice, and support about life with Fabry disease? https://bit.ly/4oIxTEx

You're in the right place.

💬 Our newsletter is built for the FAB community—by people who care. From expert info to everyday insights, we’re here to keep you informed, supported, and connected.

20/11/2025

Echocardiogram imaging may serve as an early marker for a disease of the left heart muscle in adults with Fabry disease, a study suggests. https://buff.ly/WFu0qBW

Echocardiogram imaging may serve as an early marker for a disease of the left heart muscle in adults with Fabry disease, a study suggests.

19/11/2025

Meet Susanna VanVickle: https://bit.ly/49UQqJf

A columnist whose writing shines a light on life with Fabry disease—for her and for three of her children who share the same diagnosis.

Through her column “Straight Paths with Crooked Lines,” Susanna offers honest, faith-filled stories about finding strength and meaning while navigating the challenges of a rare disease.

13/11/2025

Kindness is the heartbeat of our community. 💫

Whether it’s sharing your story, encouraging a caregiver, or offering a word of hope—it all matters.

Let’s fill the world with the same compassion that defines the rare disease community every day.

13/11/2025

If you could send one message of encouragement to another Fabry warrior, what would it be?

13/11/2025

In a rare case, a 66-year-old woman was diagnosed with two co-occurring rare diseases: Fabry and the blood disorder myelodysplastic syndrome. https://buff.ly/t91VjW2

In a rare case, a 66-year-old woman was diagnosed with two co-occurring rare diseases: Fabry and the blood disorder myelodysplastic syndrome.

12/11/2025

Even the smallest act of love can lift the heaviest burdens. 💫 https://bit.ly/3LsOqOg

In our latest column, “How a little love can lighten someone else’s load,” writer Susanna VanVickle reminds us that kindness doesn’t have to be big to make a big impact. Sometimes, it’s simply being there. 💕

06/11/2025

Chiesi and Protalix urge the EMA to reconsider monthly dosing of their Fabry drug Elfabrio after an EMA committee advised against the regimen. https://buff.ly/wrh4okB

Chiesi and Protalix urge the EMA to reconsider monthly dosing of their Fabry drug Elfabrio after an EMA committee advised against the regimen.