FIN Board


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.


FINs vision is of a world where every single person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment and cure.


The principle foundation of FIN is to be neutral and independent in all of its communication, actions, and decisions worldwide. Fabry International Network seeks to see the implementation of a global Fabry Expert Meeting that allows a platform where all relevant aspects and information of Fabry disease, current or future drugs and therapies can be shared in a non-biased environment.

Industry Partners

Policies & Annual reports

FIN Annual Report 2019
FIN Articles of Association
FIN Data Protection Statement
FIN Interaction and Relationships with the Pharmaceutical Industry

FIN is a proud member of