FABRY SUPPORT & INFORMATION GROUP
Rating: 5 stars 1 1 review 308
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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Reviews for FABRY SUPPORT & INFORMATION GROUP
My husband of 35 years of age had his 3rd stroke in May of 2012. He was sent to Barnes Jewish Hospital in St. Louis, MO. It was there where he was finally diagnosed with Fabry. The doctor being a stroke specialist did not know much about this disease except for what he found on the internet. Worst case he would have 5 years to live. That evening I came home and read up on the disease as much as possible. My 2 sister en-laws and I all found the FSIG website and telephone number. Tired of reading about it I called the number. I spoke with Jack Johnson. While telling him about my husband and what he was diagnosed, I was not aware that Jack too has Fabry and 49. When he told me, it was a relief to speak to someone that KNEW what my husband has and understood. Jack sent us all kinds of resources, drove to our house to speak with my husband. My husband has had 2 more strokes since and 2 possible TIAs. Jack calls to check on my husband. My sister is having a benefit auction for my husband. FSIG has donated bracelets to sell to help raise money to help my husband. Jack has also been a great support for our family by e-mailing with family members. Without Jack we would not of had the correct up to date research on the disease, know of doctors to get in contact with, know of informational seminars that are available and know of other people that suffer with this same rare disease. Thank You So very much FSIG you have been of great help in our journey with this disease. You gave us hope when we thought there might not be. Thank you and God Bless.
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