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February 28, 2019
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2019 Family Conference
Tenth International NBIA Disorders Association Family Conference
May 30 – June 2, 2019 -
NBIA Family Stories
Watch these informative and inspiring stories of families affected by an NBIA diagnosis.
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Support the International NBIA Patient Registry and Biobank
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- News
Collaborations will lead to 5 NBIA grant awards in early 2019
September 2018
The NBIA Disorders Association is collaborating on five grants that will be awarded early next year, three of which are dedicated to studying BPAN, the fastest-growing NBIA diagnosis. The other two disorders eligible for grants are MPAN and PKAN.
Researchers have been notified to submit applications for the grants this fall, and representatives of our organization will be involved in the award-selection process.
NBIA organization awards two grants for BPAN, including the first for an early-career researcher
September 2018
Seeking to attract more scientists to study NBIA, the NBIA Disorders Association this spring awarded it’s first-ever early-career grant to a researcher. That scientist will receive a total of $150,000 spread over two years to study BPAN.
In addition, the organization awarded a one-year $45,000 grant to another BPAN researcher.
Scientists report on progress of current NBIA research projects
One of the key activities of the NBIA Disorders Association is awarding research grants, most of it with money raised by our hardworking families.
The board of trustees receives invaluable help from our Scientific and Medical Advisory Board, which helps set research goals, evaluates proposals and monitors projects after the board funds them. In evaluating proposals, the advisory board puts greatest priority on new paths of study that could lead to a treatment or a cure.
