2018 Newsletters

12 pages of the latest news and informative articles including “German NBIA patient advocacy group seeing more BPAN families and researchers at its conference,” Family-physician consultations in 2019 will follow new process at conference,” “A genetic conference, board planning and a significant revelation for me,” “FAHN fruit fly results disappointing but useful,” “Recent NBIA fundraisers bring fun and $55,888 in support,” “Message from the President.”

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12 pages of the latest news and informative articles including “2019 conference: Hotel reservations open, volunteer planning committee,” “Our organization awards two grants for BPAN, including first for an early-career researcher,” “Providing Hope-Supporting Families Letter from Board Chair,” “Collaborations will lead to 5 NBIA grant awards in early 2019,” “London researchers complete 3-year PLAN study, with encouraging results,” “NBIA fundraisers secure $50K match, raise thousands more for research,” and “Message from the President.”

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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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