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“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." ~

 Margaret Mead

NBIA Canada is a Canadian Non-Profit patient organization formed in 2014 to support families affected by NBIA disorders in Canada and internationally.  We also strive to further research into these debilitating disorders.

Our organization is made up of dedicated volunteers and NBIA families from across Canada whom share our vision.  

Since the beginning, we have made every effort to collaborate with other NBIA patient groups worldwide as well as connect with and support the world's leading NBIA specialists.

NBIA Canada has attended several international scientific meetings on NBIA, as well as joining the International NBIA Alliance.  


In Canada, NBIA Canada is an affilliate member of the Canadian Organization for Rare Disorders (CORD) and has attended two of their rare disease conferences to date. 

NBIA Canada was incorporated as a Federal Non-profit Organization on July 15, 2016



We offer support to NBIA families, educate the public, and stimulate as well as support research in collaboration with our partners locally, nationally and internationally in our search for a cure.


We share the vision of our international partners of  living in a world where NBIA Disorders no longer cause suffering or loss of life.

Our Goals


1. To stimulate and support research in Canada and internationally on Neurodegeneration with Brain Iron Accumulation Disorders, and similar conditions, by coordinating research efforts for the benefit of individuals affected by such disorders; and

2. To educate the public, healthcare professionals, individuals, and families in Canada and internationally about Neurodegeneration with Brain Iron Accumulation Disorders and similar conditions.

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