2013 Newsletters

2013 October/November Newsletter

12 pages includes articles “Clinical trial a chance to meet, greet friends, interpret for Spanish speakers,” NBIA board has launched next round of research grant making,” “At last, our association has a brand new, easy-to-use website,” “Campaign to raise $135,000 underway for support, research,” “Check out our new online community on RareConnect,” “The last day of February 2014 shines a light on rare diseases,” “Recent summit on rare diseases provides trove of ideas for us.”

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2013 June/July Newsletter

16 pages of the latest news and informative articles including “Seventh International Family Conference News – “Record number attend San Antonio gathering and enjoy learning and sightseeing together,” “Online campaign to raise $135,000 with FirstGiving starts in September,” “Researchers launch imaging study to look at brain blood flow in PKAN,” “What you need to know about home health care,” Know how to tap the media to spread NBIA awareness,” To cope with disability, be active, reach out to others, learn to relax,” “Child neurologists come together in Innsbruck to learn about NBIA disorders.”

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2013 February/March Newsletter

16 pages of the latest news and informative articles including “Deferiprone clinical trial underway and off to a good start,” “Organization hires first staff member to help raise funds, write grants,” Association ends first full fiscal year with record revenues, audit,” “April family conference in San Antonio to unveil new research, exciting studies,” Rare Disease Day celebrated worldwide on February 28.”

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