FIN is as an umbrella organisation and representing over 54 countries and 62 patient associations around the world. Membership is free and open to any national patient organisation in which Fabry patients are represented. In difficult to reach geographical areas, FIN relies on individual supporters.
FIN is a non-profit organisation registered in The Netherlands. The administrative support is based in Beveren, Belgium. The Board of Directors meet regularly either online or face-to-face. In addition, they hold regular meetings with the industry partners and medical advisors.