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  • Help us raise funds for BPAN research!

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  • 11th International Family Conference

    Being held VIRTUALLY May 20-23, 2021

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  • Demystifying Research Grants:
    Deciding Where Your Money Goes

    Our webinar from 8/13/20 is now available to watch on-demand.

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    Information, Emergency Information Form, and Webinar Recording

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NBIA NEWS & INFORMATION

Register now for our first-ever virtual family conference

April 2021

Time is running out to register for the 11th International NBIA Disorders Association Family Conference to be held online only from May 20 to 23. The deadline is May 14.

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Fundraising race is on for Million Dollar Bike Ride

April 2021

June 12 marks the eighth annual Million Dollar Bike Ride and the second year it will be virtual because of the COVID-19 pandemic. If Team NBIA Disorders raises at least $20,000, every dollar will be matched, up to $30,000, to support a grant for BPAN research.

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BPAN research moves ahead with grant from 2020 bike ride

April 2021

A BPAN research grant that could inspire new approaches to treating the disorder was awarded in January through the University of Pennsylvania with collaboration from the NBIA Disorders Association.

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NBIA Poland funds study to better understand MPAN’s causes

April 2021

The association that represents all NBIA disorders in Poland has awarded a research grant for €59,000 ($71,571 U.S. dollars) to two researchers in a German Research Center who are investigating still-unanswered questions about the underlying causes of MPAN.

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Scientific & Medical Advisory Board welcomes two new members

April 2021

The newest members of the association’s Scientific & Medical Advisory Board (SMAB) are Professor Robin Ketteler, a researcher-manager of the High-Content Screening Core Facility at the Laboratory for Molecular Cell Biology, University College London, and Dr. Valeria Tiranti, head of the Molecular Pathology of Mitochondrial Disorders lab at the IRCCS Foundation Neurological Institute Carlo Besta in Milan, Italy.

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Partners in Hope Monthly Giving

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2020 Top-Rated Nonprofit Award

2019 Top-rated Nonprofit

We have been honored with our second consecutive year of receiving a Top-Rated Award from GreatNonprofits! We appreciate all of your contributions!

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Drew and his mother walking down a hallway

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