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As so many who have come before, have already established, the inclusion of the Rare Patient Advocates and their voices are vital to the future of the Rare Disease Community as on the whole. For it’s these organizations that are often the thread that weaves together the medical communities, researc

For those with chronic illnesses, the word and concept of "pacing oneself" comes up frequently. It's something I struggle with on a regular basis. Often I feel there is a great chasm separating all I wish to accomplish in relation to all I actually accomplish. Over the years, I have learned that