FABRY SUPPORT & INFORMATION GROUP
Rating: 5 stars 1 1 review
PO Box 510 108 Ne 2ND St, STE C Concordia MO 64020 USA
Fabry Support & Information Group (FSIG) is a 501(c)(3) nonprofit organization. Our mission is to raise awareness of Fabry disease and its symptoms and to improve the quality of life for those affected by Fabry. The FSIG website provides information and mutual self-help by linking patients and family members/caregivers. In this way members can support and encourage one another. An increased understanding of Fabry disease and emotional support may alleviate some of the burden associated with this rare disorder.
Patient meetings - since fabry patients have a hard time with travel, fsig takes our meetings to them in cities near them. We provide them with up to date information from medical and industry professionals. This also gives patients an opportunity to talk to other fabry patients who are facing the same day to day challenges as they are. In 2014, we reached approximately 286 patients/family members.
eyes on fabry - the program partners with optometric organizations to facilitate educational opportunities presented by a medical professional knowledgeable about fabry disease. These presentations are often cme accredited. Fabry patients attend sharing their story of disease impact and diagnosis. The doctors see firsthand the corneal verticillata via a slit lamp examination.
pal award - utilize video to create a visual educational tool that teaches the underlying causes of lysosomal storage diseases (lsds) in a clear, concise manner readily understood by a wide audience and applicable to multiple lsd conditions.
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