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Demystifying Research Grants:
Deciding Where Your Money GoesOur webinar from 8/13/20 is now available to watch on-demand.
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Living with NBIA During the COVID-19 Pandemic
Information, Emergency Information Form, and Webinar Recording
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NBIA NEWS & INFORMATION
Team NBIA Disorders wins BPAN funding as deadline for letter of interest looms
September 2021
Once again, Team NBIA Disorders has qualified for the maximum matching grant to fund BPAN research through the Million Dollar Bike Ride organized by the University of Pennsylvania's Orphan Disease Center.
NBIA Disorders Association celebrates 25 years
September 2021
This is a year of celebration for the NBIA Disorders Associations as we mark 25 years of service to the NBIA community.
CoA Therapeutics launches phase 1 PKAN drug study
September 2021
CoA Therapeutics Inc., in April began a phase 1 study of the safety of a potential drug for Pantothenate Kinase-Associated Neurodegeneration (PKAN) by testing it in healthy volunteers.
Study brings new insights on BPAN defective gene
September 2021
A recent study of Beta-propeller Protein-Associated Neurodegeneration (BPAN) gained promising preliminary insights in how the defective BPAN gene may cause breakdowns in the cell clean-up process as well as iron accumulation.
BPAN families have a new way to share data, accelerate research
September 2021
BPAN individuals and families are invited to share health information about the disorder on a new, secure platform so that researchers will have access to far more information than would otherwise be possible.
SMAB Recommendation
In line with the major medical advisory groups including the Centers for Disease Control (CDC), the NBIA Disorders Association Scientific and Medical Advisory Board strongly advises all people with an NBIA disorder and their families to follow CDC recommendations for vaccination against the COVID-19 virus. Recommendations can be found here.
Partners in Hope Monthly Giving
2020 Top-Rated Nonprofit Award
We have been honored with our second consecutive year of receiving a Top-Rated Award from GreatNonprofits! We appreciate all of your contributions!
