Fabry International Network

The Fabry International Network (FIN) was incorporated in the Netherlands utilizing the Dutch laws for non-profit organizations to raise awareness and educate the public about Fabry disease, a very rare life threatening genetic, lysosomal storage disorder.

Fabry affected are missing a key enzyme, which causes extreme pain, inability to sweat, gastrointestinal problems and eventually kidney failure, heart attacks and strokes. The average life span of a male patient without treatment is 40-50 years of age.

FIN is connected to over 19 Member country including Canada and the USA. Membership is free and open to any national patient organization in which Fabry patients are represented. 

A board of directors was elected and Kees Bosman, the Treasurer, are from the Netherlands.

The past president of Norway’s Fabry Association Rune Sedal, is the President

The Secretary is Ed Koning, a Fabry patient, and President of the Canadian Fabry Association.

His wife Marlene Koning is also a board director and has a passion for helping caregivers of Fabry patients.

At the Annual Meeting in Amsterdam, February 2008, our new Vise President  Erica Schenk from the Netherlands,  was elected.

At the Annual teleconference Meeting, February 2009, our new board member Lut De Baere from Belgium, was elected. 

Christina Graef, from Denmark resigned just before the AGM 2009, of personal reasons. We do thank Christina for her enthusiasm and help.

FIN has also attached 3 contact persons that will work for us in different region, like Martynas Davidonis from Lithuania helping us with the eastern Europe and Wanderlei Cento Fante, Founder President Abraff, in Brazilien help us with South America and Megan Fookes, President of the Australian Fabry's Support Group Inc, helping us with Australia.    

The FIN board meets regularly via telephone conference, and we have also established regulary meeting points with our 3 general sponsors from the Fabry industry, Amicus, Genzyme and Shire

Canada and Poland currently need the most help as these countries do not fund or provide access to enzyme replacement therapy (ERT) based on international criteria and guidelines.

Poster-FIN-2008.pdf