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Council of Patient Advocates (COPA)™ Workshop: WORLD Translation and WORLD Activation at WORLDSymposium
During WORLDSymposium, Lysosomal Disease Network’s (LDN) Council of Patient Advocates (COPA) will meet for this two-part workshop. In the first session of the morning, WORLD Translation is an opportunity to review ongoing patient-generated research proposals, and discuss how patient advocates are partnering with investigators in the LDN to facilitate, design, and implement patient-focused studies and clinical trials aimed at the issues most important to those affected by lysosomal disease. The second session, WORLD Activation, is an interactive panel discussion where patients and patient advocacy group leaders can engage in a high-level discussion to plan for the LDN’s next competitive application to the NIH Rare Disease Clinical Research Network’s program.