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2018 April/May Newsletter

20 pages of the latest news and informative articles including “Charleston, S.C., chosen as site for tenth family conference in 2019,” Deadline looming to seek BPAN research grants,” “Nearly $150,00 in grants awarded for BPAN research,” “NBIADA donor base grew in 2017 with record number of new givers,” “Scientists report on progress of NBIA research projects,” “NBIA Alliance declares March as worldwide awareness month,” “Retrophin starts phase 3 trial; other drugs in testing pipeline,” “On World Rare Disease Day, NBIA families make it personal,” “NBIA families have a busy winter netting nearly $59,000 for our work,” “Attention cyclists, runners: We would love your help,” “Message from the President.”

Editor’s Note: Correction on pg 11 regarding BRAINCURE project. Second paragraph should say “One of the project’s goals,” as ENACH (Spanish NBIA organization) states there are additional research areas BRAINCURE is now investigating in addition to removing iron from brain cells.

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