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Fabry Support & Information Group

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.



Helping Families



Patient Stories






Patient Meetings

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.

Watch Our Story

One Test Saves Lives

Testing for Tots helps fund research focused on awarding grants to help gain earlier diagnosis for families

Learn More


Patient-Focused Drug Development Meeting on Fabry Disease

An exciting initiative by the National Kidney Foundation and Fabry Support & Information Group to inform the FDA about the patient perspectives of living with Fabry disease.

The EL-PFDD meeting on Fabry disease

  • This will be a VIRTUAL MEETING on Monday, September 19, 2022 from 10:00 AM to about 3:15 PM Eastern Time
  • This meeting will be broadcasted with a NOVEL NEWSCAST FORMAT, with patient testimonies and remote audience participation
The meeting agenda consists of two brief presentations on Fabry disease by experts in the disease, a presentation by the FDA, four patient panels, and extensive audience discussion sessions. The broad discussion topics will be:
  1. Living With Fabry Disease Nephropathy: Disease Symptoms and Daily Impacts
  2. Clinical Trials in Fabry Disease Nephropathy
  3. Current Challenges to Treating Fabry Disease Nephropathy.
The meeting will be co-chaired by two leading nephrologists who are experts in Fabry disease:
Dr. Eric Wallace, University of Alabama at Birmingham
Dr. Anjay Rastogi, David Geffen School of Medicine at UCLA