The primary aim of The Fabry International Network (FIN) is to facilitate collaboration between Patient Organisations to support those affected by Fabry Disease. It seeks to do this primarily through enabling communication, promoting good practices and acting as an independent forum for Fabry Associations.
FIN is connected to over 45 countries 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, such as Mr Martynas Davidonis from Lithuania to help FIN reach Eastern European Patient Organisations or Mr Wanderlei Cento Fanta, the founder and president of Abraff in Brazil, helping FIN with South America’ s Associations.
FIN is a non-for-profit organisation registered in The Netherlands. The administrative support is based in Amersham, United Kingdom. The board of Directors meet regularly either by teleconference or face-to-face. In addition, they hold regular meetings with the Industry Partners and Medical Advisors.
FIN was established in 2005.
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. The Fabry International Network seeks to see the implementation of a Global International Fabry Conference 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.
Articles of Association
Please download the Articles of Association here.
Please download the Netherlands Chamber of Commerce Commercial Register extract here
Please download our 2015 accounts here
Please download our funding sources for 2015 here
Please download our 2014 accounts here
Please download the Interaction & Relationships with the Pharmaceutical Industry policy here.
Please download the Non-endorsement policy here