FABRY SUPPORT & INFORMATION GROUP
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Mission Statement
Fabry disease is a rare genetic condition affecting all ethnic groups worldwide. Fabry is a progressive multi-symptom lysosomal storage disorder (LSD) affecting the kidneys, heart, brain and other organs in both male and females. Classic symptoms include sensations of pain and burning in the hands and feet, diminished tolerance to heat or cold, sweating abnormalities, corneal whorling, impaired hearing, fatigue and gastrointestinal issues. It is the mission of the Fabry Support & Information Group to provide the Fabry community and the general public with information, advocacy, education and compassionate support to improve the quality of life and the quality of care for Fabry patients and family members. FSIG strives to raise awareness of Fabry disease and it’s symptoms within and for the Fabry patient, family member, caregiver, medical and therapeutic communities as well as the general public. Increased knowledge and awareness of this rare disease will be beneficial for all involved.
About This Cause
The Fabry Support & Information Group (FSIG) is a nonprofit support group formed by Fabry patients in 1996 to help those affected by this debilitating disease. FSIG offers a range of programs to help the Fabry community. FSIG works with the medical community to facilitate research and improved understanding, advocates on behalf of patients with involved stakeholders, promotes education and awareness opportunities for patients and their families and encourages mutual self-help. FSIG provides informational materials, publishes newsletters, maintains an active website and offers additional support services. FSIG is open to all. It is an organization dedicated to those dealing with the challenges presented by this rare disease, their family members, care givers, friends and those involved in the Fabry community. FSIG strives to lessen the burden of Fabry disease by promoting mutual support. Linking members of the community eliminates many feelings of loneliness associated with rare conditions. The FSIG website at www.fabry.org provides information and additional networking opportunities. FSIG also provides newsletters, informational packets, physician referrals, an ongoing series of regional patient education meetings and patient advocacy activities. Donations to FSIG are tax deductible. FSIG relies on charitable donations, in kind contributions, corporate/industry grants and the generous support of individual members and family to continue providing important services to those affected by Fabry disease. Your ongoing support is so important to continuing educational outreach opportunities, raising awareness and providing assistance with programs offered to help those in need.