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 , the Treasurer, are from the Netherlands.
The past president of Norway’s Fabry Association , is the President
The Secretary is , a Fabry patient, and President of the Canadian Fabry Association.
His wife is also a board member and has a passion for helping caregivers of Fabry patients.
FIN has also attached 2 contact persons that will work for us in different region, like from Lithuania helping us with the eastern Europe and , Founder President Abraff, in Brazilien help us with South America.
meets regularly via telephone conference and we have also established regulary meeting points with the Fabry industry.
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. To improve communication one focus is on developing it's website.