If you are a physician or have a specific research interest, you can contact us to discuss your patient or project with us by calling

NEW ENROLLMENTS ARE NOW CLOSED. Ongoing enrollments will be completed.

We continue to be available to investigators as a resource of collected (anonymous) information, and by informing enrolled individuals of appropriate studies. We have accomplished our initial goal of identifying affected individuals and confirming their diagnosis by clinical, histopatholgic and biochemical studies. Over 600 well-characterized individuals have enrolled in the Registry, most of whom are interested in participating in research related to their disorder. A large database with historical, clinical, and quality of life information has been established. We plan to maintain this valuable resource for future investigations.

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Our address is:  U. of W. Dermatology, Box 356524, Rm.BB1353,
 1959 NE Pacific St.  Seattle, WA 98195
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