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This is
a call for help from Ina and Fred Koensgen in Germany. We have
a 7 year-old daughter, Ina, who suffers from Maple
Syrup Urine Disease. This is
a metabolic disease, also known as MSUD
leucinosis. MSUD is not
common, and we have not yet met any families who are living with it. We have
nobody to turn to for advice or support, and are sure that there must be
families somewhere out there also needing help. We would
like to create a multilingual website for sufferers and their parents to
exchange experiences and maybe together manage to solve the everyday problems
that we encounter. In
addition to getting to know fellow-sufferers, we also plan to compile a data
bank listing low protein products, where to get them, exchange proven recipes
and generally lighten the burden we all have to bear. We would
be thankful for your personal suggestions for Ina’s website. Please
contact us either per e-mail to or by
mail, telephone or telefax to Ina Koensgen Zur Gabjei 96 D-50321 Bruehl GERMANY Tel. 0049 (0) 2232-210699 Fax. 0049 (0) 221-97661-11 |