About

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 52 countries and 64 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, 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 Beveren, Belgium. 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.

Vision

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.

Mission

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

Accounts

Click here to request our annual accounts report

Policies

Download the Interaction & Relationships with the Pharmaceutical Industry policy here.

Download the Non-endorsement policy here

Download the FIN Data Protection Policy here

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