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Article
November 1990

Retinitis Pigmentosa: Patients' Fight for Sight

Author Affiliations

Boston, Mass

Arch Ophthalmol. 1990;108(11):1535. doi:10.1001/archopht.1990.01070130037020

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Abstract

This book contains a collection of lectures presented at the Fourth Congress of the International Retinitis Pigmentosa Association that convened in Bad Nauheim, West Germany, in May 1986. These essays describe efforts by patients with retinitis pigmentosa (RP) to promote research on their own disease. Technical aids for gaining autonomy, therapeutic possibilities, genetics, aspects of living with RP, and the RP societies and their role in promulgating RP research are a few of the topics covered

"The scientific chapters have been written primarily for a lay audience."

Several issues presented in this edition should be considered as paradigms in the attempt to find a treatment for any medical disorder. One such example is the establishment of a screening center for patients with RP in which information regarding these patients is recorded. Another essay stressed the importance of cooperation between patients and researchers in establishing an effective research protocol.

In the

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