About us

Our Purpose

Our purpose is to raise understanding of Fabry disease, stand up for the needs of our community, and advance the search for better treatments and, one day, a cure. FSIG serves as a trusted bridge—bringing individuals and families together with information, emotional support, and meaningful connection. We link the Fabry community with medical professionals, researchers, pharmaceutical partners, and regulatory authorities, ensuring every voice is heard and valued.

We are committed to walking alongside those affected at every stage of their journey, offering resources, community, and compassion. Above all, we strive to help individuals and families live fuller, more empowered lives with hope for the future.

Our Mission

It is the mission of the Fabry Support & Information Group (FSIG) to raise awareness of Fabry disease and its symptoms, to advocate for community needs and to lead the fight for the most effective treatment possible and eventually a cure. FSIG provides a link for the Fabry community to information, each other, the medical community, researchers, the pharmaceutical industry and regulatory authorities. FSIG strives to support affected families and individuals lead fuller lives.

Our Story

FSIG was started in 1996 as a “kitchen table” support group

Formed by two Fabry patients and a supportive family member with the hope that their particular understanding of this disease, combined with experience at gathering information and working with doctors could benefit others. FSIG is a continually growing and expanding organization constantly looking for new opportunities to assist in improving patient’s lives.