2017 August/September Newsletter

24 pages of the latest news and informative articles including “Our biggest international conference draws 225, including 43 first-time families,” “Million Dollar Bike Ride nets $101,014 for BPAN research,” “Gene editing may one day fix rare disorders like NBIA,” “Take time to go outside, play together, experts and others advise NBIA families,” “Doctor who test PKAN drug encouraged by early results,” “Two promising compounds for PKAN among research updates shared at conference,” “Questions to ask before enrolling in a clinical trial,” “Board awards its first grants for FAHN research,” “First patients in Retrophin trial to receive drug targeting PKAN,” “Record number of early career researchers attend NBIA Symposium,” “NBIA Alliance receives $122,000 for the International NBIA Patient Registry and Biobank,” “Letter from Board Chair,” “Families, friends raise more than $146,000 for NBIA research and support services.”

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