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

New board of directors was elected at our AGM in February 2010 and the new President is Lut De Baere and the Vise President  is Erica Schenk from the Netherlands.

Kees Bosman, the Treasurer, are from the Netherlands.

The Secretary is Ed Koning, the past 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.

Our 3 new board members are Jack Johnsen, Anna Meriluoto and Megan Fookes and we all appreciate their comittment for the Fabry community already.

Rune Sedal resigned as FIN President at the FIN AGM 2010, after serving as a FIN board member since startup in 2005.

FIN has also attached 2 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. 

The FIN board meets regularly 3 times a year via joint telephone conference, with our 3 Industry Partners, Amicus, Genzyme and Shire together with our FIN MAB's. Will also have a 4th joint face to face meeting with our FIN Partners during the year.

Please don't hesitate to give any feedback or ask questions to the FIN board of directors.