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.
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.
The contributions of our medical advisors are invaluable and are greatly appreciated. FSIG is very fortunate to have Christine Eng, M.D. is Associate Professor, Department of Molecular and Human Genetics at Baylor College of Medicine in Houston TX, Edwin Kolodny, M.D. Professor of Neurology at New York University School of Medicine, New York, NY and William Wilcox, M.D., PhD is a Professor of Human Genetics at Emory University at Atlanta, GA. They all have many years experience in the treatment and research of Fabry and other related Diseases.
FSIG’s primary goals are to educate and support. Through mutual self help, it is hoped that the emotional support, which is so important to us all, can be obtained. To help facilitate this FSIG maintains a confidential database of Fabry patients to assist in networking. This database also serves as a means of documenting the increasing numbers of diagnosed Fabry cases. FSIG also maintains a library of information about Fabry disease and is continually updating this body of knowledge.
FSIG Membership and Support
FSIG relies on charitable contributions, in kind donations, corporate/industry donations and grants to continue providing services to those affected by Fabry Disease. Contributions may be sent to FSIG, 108 NE 2nd Street, Suite C, P.O. Box 510, Concordia, MO 64020.
(For additional contact information click the Contact-FSIG link on the top left navigator.)