2012 Newsletters

2012 October/November Newsletter

16 pages includes articles “Meetings in Netherlands, Paris show power of collaboration,” Pathfinder Award goes to NBIA Researcher in England,” “Long-awaited deferiprone trial about to start in Oakland", “Premier NBIA researcher lectures, learns, in visit to top children’s hospital,” “Gala puts spotlight on rare disease community.”

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2012 June/July Newsletter

16 pages includes articles “Path to a Cure Campaign starting: goal $200,000 by April 2013,” “New biotechnology firm hoping to develop treatment for PKAN,” “Long-awaited U.S. deferiprone trial starting this fall in Oakland,” “Family makes it personal for pharmaceutical company,” “NBIA’s German sister group meets, celebrates 10 years,” “Researchers to gather in Netherlands to work on NBIA, related brain disorder,” “Australian NBIA families gather to learn, support each other,” At long last, my family has a big piece of the puzzle,” “Top 10 ways you can use social media for NBIA advocacy,” “NBIA groups springing up around the world.”

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2012 February/March Newsletter

16 pages includes articles “NBIA board lays out vision for organization’s next 3-5 years,” “Record number of grants awarded to NBIA researchers in 2011,” “NBIA experts developing ‘best practices’ for care and the management of NBIA patients,” “NBIA board maps out path to cure for NBIA,” “NBIA board plans full-court press to speed up research into PKAN,” “NBIA organization welcomes volunteer social media director,” “ The NBIA family is getting bigger as three more European groups form.”

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