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The information posted on this website is not to be considered medical advice and is not intended to replace consultation with a qualified medical professional. As a group of ECD patients and their caregivers, our goal is to provide sufficient information so that those affected by ECD are able to become more knowledgeable about this rare disease and participants in their disease management plan. The primary responsibility of your disease management plan is with your treating physicians and you should only follow your treating physicians advice. DO NOT change/modify your disease management plan on your own without consulting your treating physicians.
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Last updated: January 25, 2015