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2019 August/September Newsletter

20 pages of the latest news and informative articles including, “NBIA’s 10th International Family Conference draws nearly 300 to Charleston, S.C.,” “Clinical trial of Retrophin drug fails; shows no benefit for PKAN patients,” An anguishing rare disease journey and then a path leading to hope,” No time like the present t plan for your loved one’s future care,” “About that money you raised: How is your board spending it?” “Interest rising in cannabis for NBIA, but much more research is needed,” “Mother shares ways to communicate when your family member can’t speak,” “BPAN grant award takes a new approach to understanding the brain’s iron problem,” NBIA board seeks PLAN, FAHN proposals and is again supporting a UPenn BPAN grant,” “NBIA Disorders Association holds first Facebook Live event on gene therapy,” Deferiprone trial results produce positive findings for some with PKAN,” “Longtime SMAB member stepping down,” “Recent NBIA fundraisers bring fun and more than $48,000 in support,” “Message from the President.”

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