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  • Our 20th Anniversary!

    The NBIA Disorders Association is marking a milestone in 2016: Our 20th Anniversary. That means it’s time to celebrate! Click the button for more information and to help us with our planning:
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  • 2015 Family Conference

    A HUGE SUCCESS! Watch the closing ceremony video.

  • Please join our We Can for BPAN campaign!

    Your help is critical! With your help the research can begin.
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  • NBIA Alliance News

We Can for BPAN


June 15 – September 1, 2015. Please help us raise awareness and funds for a BPAN mouse model research grant. The organization currently has  $27,760, but we need $40,000 more for this important 2 year research project which totals $67,760.

Your help is critical! The faster we do this, the faster the research can begin. So don’t wait to get started. We CAN for BPAN runs for just two months. Together, We CAN and we are counting on you!   ...More


Eighth International Family Conference May 28-31, 2015

Eighth International Family Conference May 28-31, 2015Our Eighth International NBIA Disorders Association Family Conference was held May 28-31, 2015. Site of the conference was the Embassy Suites Minneapolis North in Brooklyn Center, Minn.



NBIA Family Survey Results Reveal Strengths, Opportunities

SurveyThe NBIA Family Survey results are in, and they show that nearly 90 percent of you agree or strongly agree that the information in our newsletters and on our website is helpful. The survey results already are providing the NBIA Disorders Association with important information on how to best serve our NBIA individuals and families. We received responses from 78 families and individuals from Sept. 1 to Oct. 10. ....More

NBIA Board Chooses New Development Director

Marsha BryanThe NBIA Board of Trustees has selected a former consultant in nonprofit management with longtime experience managing fundraising campaigns as its new development director. The board unanimously selected Marsha Bryan of San Marcos, Calif., to direct all the organization’s fundraising activities. She will be responsible for cultivating donors, applying for grants, facilitating planned giving, managing annual donor recognition programs and assisting families with fundraising efforts, among other duties.   ...More


2015 Research Grant Cycle Open For Applications

NBIA Disorders GrantResearchers interested in applying for a grant from NBIA Disorders Association have until April 1, 2015 to submit their application.

Grants will be for one year and up to $45,000 with funding to begin June 30, 2015. Proposals to develop models will be considered for multi-year funding with budget justification. Please see our grant application for more details:   ...Grants Program Information


OHSU Awarded Research Grant for 2014 PKAN Grant Round

Dr. Susan HayflickDr. Susan Hayflick of Oregon Health & Science University has been awarded $45,000 by our organization for her grant titled, “Examining the role of ischemia in the neurodegenerative disease PKAN.” The one year grant period began on December 15, 2014. Her group will be using the research grant to investigate a connection between PKAN and stroke. ... Read More

Canadian Group Joins NBIA Alliance

NBIA Disorders CanadaNBIA Disorders Canada has joined the NBIA Alliance. They are a newly formed group, led by Michelle Sheppard-Whalen. Michelle’s son Landon was diagnosed with FAHN in spring, 2014. They are reaching out to other Canadian NBIA families to connect and work together to increase research and awareness in Canada. Contact email is nbiacanada@gmail.com. They hope to have a website soon.


Spanish Researchers Receive Funding to Study NBIA Disorders

ENACHENACH Asociation, the NBIA organization in Spain, is working with Dr. Belén Pérez-Dueñas, a researcher with The Centre for Biomedical Network Research on Rare Diseases (CIBERER) Unit 703 at the Sant Joan de Déu Hospital in Barcelona. She is leading a project titled “Clinical evaluation and genetic characterization of Neurodegeneration with Brain Iron Accumulation disorders to be funded by TV3 Marathon in Spain. ...More


NBIA Alliance Travel Grant Awards

NBIA Alliance Travel Grant AwardsThe international NBIA umbrella patient organization NBIA Alliance announces the award recipients of the travel grants to participate in the 3rd Joint Symposium on Neuroacanthocytosis (NA) and Neurodegeneration with Brain Iron Accumulation (NBIA), held in Stresa, Italy, from October 30th to November 1st, 2014. ...More

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