P01—The Fabry International Network

L. De Baere; E. Schenk; A. Koning; K. Bosman; M. Fookes; J. Johnson; M. Koning; and A. Meriluoto Fabry International Network, Melsele, Belgium; Fabry International Network, Oosterwolde, the Netherlands; Fabry International Network, Edmonton, Alberta, Canada; Fabry International Network, Kapelle, the Netherlands; Fabry International Network, Willoughby, Australia; Fabry International Network, Concordia, Missouri; and Fabry International Network, Vantaa, Finland Fabry disease is a very rare, inherited, life-threatening disease that affects only about 10,000 people worldwide. It takes on average 17 years to diagnose this metabolic storage disorder. Patients lack sufficient enzyme to break down fatty deposits, resulting in debilitating pain, organ failure, and premature death. The only treatment currently available is enzyme-replacement therapy. In December 2005, the Fabry International Network (FIN) was incorporated as a nonprofit organization in the Netherlands. Membership of FIN is open to any patient organization in which Fabry patients are represented (currently 23 in 21 countries) but may be extended by invitation to individuals in exceptional circumstances. FIN’s vision is of a world in which every person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment, and cure. The mission of FIN is to be a global, independent network of Fabry patient associations whose purpose is to collaborate, communicate, and promote best practice to support those affected by Fabry disease. FIN has developed a poster to raise awareness of FIN in efforts to educate individual Fabry patient organizations in order to develop a truly worldwide Fabry patient network.