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E-drug: Orphan Drugs
Greetings All
I recently joined this Listserv in my capacity as a Director of the Wilson's
Disease Association International.  Wilson's Disease, for those of you who
may not be aware, is a rare genetic disease of copper accumulation and
poisoning.  It's effects include liver, neurological and pyschiatric
symptoms. If left untreated can cause severe disablility and death.
We have many patients in developing countries who are unable to 
obtain proper  medication to treat this disease.  The three main 
medications used are  Penicillamine, Trientine, Zinc Acetate. 
Currently we have patients in
Mexico, Romania and India who are either being treated with poor quality
substitutes, or unable to receive any treatment in their countries.
I have spent the last several weeks investigating how to solve this problem.

I have spoken with representatives of Merck & Co.(who manufactures
penicillamine and trientine), WHO, MAP International, and others. To date I
have not found a solution.
My Question:  If any of you have a suggestion on how to proceed, your 
help would be greatly appreciated.
For more information on our organization and Wilson's Disease, please 
visit our website at: www.wilsonsdisease.org

Thank you
Mary Graper
Wilson's Disease Association International
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