Secretary
Ed Koning
Hello. My name is Adrian Koning. I am married to Marlene and together we have three young adult sons and we all live in western Canada. In early 2001 at the age of 43 I was diagnosed with Fabry disease as a result of total kidney failure. What a shock! Also in 2001 I was fortunate to begin enzyme replacement therapy on compassionate use basis, went on dialysis and was blessed to have a live donor kidney transplant. I want to utilize my skills and talents as a professional engineer to help minimize needless suffering for those with Fabry disease.
I am honoured to be part of the FIN board who along with all of its member organizations is helping to educate and raise awareness of Fabry disease. FIN is developing strong positive relationships with various stakeholders worldwide to ultimately develop a world wide standard of best practises and comprehensive care for Fabry patients, their families as well as caregivers. It begins with finding patients through correct diagnosis and proper treatment. email
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