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COVID-19 ALERT!: Start using the Appointment Companion to support your remote appointments

Jack Johnson

Co-founder and Executive Director

With the support of affected family members the Fabry Support & Information Group (FSIG) was formed in 1996. After years in a volunteer role as President of the Board of Directors Jack stepped down from the board to take on the position of Executive Director. Jack is responsible for much of the strategic vision of FSIG along with overall day-to-day management. Coming from a family with a long history of Fabry disease involvement, providing support and advocacy for others in the Fabry community has always been a matter of great personally importance.