These resources are not the friendly sort that take you by the hand and say gently "We'll teach you how to cope". These are the technical, professional, hard-science resources that provide the facts necessary to build those friendly guidelines.
If long words and blocks of medical jargon don't make your eyes glaze, you might want to check some of these out; this is the best list I have so far of information available to laypeople. Most aren't provided by people trying to sell you something.
Rare Diseases Clinical Research Network (from the US National Institutes of Health) has a UCD Consortium.
National Urea Cycle Disorders Foundation (and some links to their partners).
National Organization for Rare Disorders has a Urea Cycle Disorders page.
The NIH Genetics Home Reference.
Hyperammonemia (discovery and treatment of a serious case of late-onset UCD)
Suggested Guidelines for the Diagnosis and Treatment of Urea Cycle Disorders
NAGS deficiency (CarbaGlu sells a pharma treatment, but they have some very useful info on UCDs nonetheless)
NORD's Rare Disease Database has been exceptionally helpful, while RDCRN has a nifty diagram of the urea cycle with accompanying descriptions of how each of the disorders result from a break in the system. I need to spend some more quality time with both.
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