A Moving New Video about Fabry Disease Called "Facing Fabry Together"

Annamarie Dillon | May 21, 2013

We continue to promote Fabry awareness, even though the “official” Fabry awareness month of April has passed.  As part of that, we wanted to highlight a new and moving video about Fabry disease.

Facing challenges in life can be daunting, but to feel that you are not alone can be a comfort. Over the past year, we have been working together with members of the community to create a film called Facing Fabry Together (www.facingfabrytogether.com). Families from France, Germany, Brazil, and Canada opened their hearts and their homes in this film in order to help others living with Fabry disease.

Through the stories told by patients, families, and caregivers, this film highlights common experiences shared by those with Fabry disease. Asked about her involvement in this project, Adriana Slongo said, "I was very happy to participate in this video. The experience of sharing the story of my family with others was extremely rewarding. I hope to help families living with the same problem. Being a patient with a rare disease does not prevent human beings having hope of a better life and future."

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