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mark beckwith vid

Mark Beckwith is the executive director of Nevus Outreach Inc, an organization to Improve awareness and education about large congenital melanocytic nevi (CMN) and neurocutaneous melanocytosis (melanosis) (NCM). Nevus Outreach started out as an American patient advocacy group but quickly realized that it would be beneficial for patients with these rare conditions to combine scientific, clinical, advocacy, regulatory information with other CMN and NCM organizations from around the world. At the 2011 NEVUS annual meeting, 33 representatives from 13 patient associations throughout the world were present to explore similarities and differences between their organizations and to begin the process of sharing information more openly. Today, the Nevus Global Initiative is up and running and their proposed physician-validated data and tissue repository has been accepted into the NIH's Global Rare Disease Registry (GRDR) pilot program, slated for completion of development by mid-2013. The Nevus Global Initiative would not be possible without the generous assistance of the Morgan Family Foundation, the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS-NIH), the Office of Rare Disease Research (ORDR-NIH), the University of Tübingen, and the members of all the congenital melanocytic nevus patient associations who donate time and effort to the Initiative.