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  • NBIA Alliance Patient Organzations map

    Patient Organizations

    The NBIA Alliance is made up of patient organizations from around the World. Please locate the organization nearest you.

    Find an Organization

  • Neurodegeneration with Brain Iron Accummulation

    Neurodegeneration with Brain Iron Accummulation

    This image shows the different types of NBIA disorders. Click on the button below to learn more about NBIA, types, symptoms, therapies, and more.

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  • TIRCON Meeting - October, 2015

    TIRCON Meeting - October, 2015

    Over 65 researchers, clinicians, NBIA family members and representatives of patient organizations were on hand for the final TIRCON meeting Oct. 15 and 16 in Munich, Germany, to take stock of all that has been accomplished over the past four years.

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Member Organizations

NBIA Canada

Association International DNAI (France)

Hoffnungsbaum e.V. (Germany)

Associazione Italiana Sindromi Neurodegenerative Da Accumulo Di Ferro (Italy)

Stichting Ijzersterk (Netherlands)

ENACH Asociación (Spain)

NBIA Suisse (Switzerland)

NBIA Disorders Association (USA)

Welcome to the NBIA Alliance Website!

The NBIA Alliance is now 8 members strong!

The Alliance is an international umbrella organization for NBIA lay advocacy groups. It started in January, 2012, in conjunction with the kick-off meeting of the European Union funded project TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration).

As of January, 2016, we are 8 members strong from member organizations in Canada, France, Germany, Italy, Netherlands, Spain, Switzerland and the United States.

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International Patient Registry

The NBIA Alliance is compiling patient data for an International Registry for use by researchers and clinicians.

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Clinicians

Are you a clinician who is currently seeing an NBIA individual or has in the past? We would like to ask you to join an International Clinician Database for NBIA disorders. Are you interested in participating in our International Patient Registry?

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Researchers

Are you interested in NBIA research? Do you want to be informed when NBIA research grants are available? Would you like to participate in our International NBIA Patient Registry? Join our Researchers Database to be notified of the latest research news, where research is currently being done, and who is offering grants.

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Interested Lay Advocates

Are you interested in starting an organization in your country for NBIA disorders? Would you like your organization to be a member of the world-wide Alliance working together to find a cure for all NBIA disorders? Do you want to learn more about how to go about achieving this goal?

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NBIA Clinical Centers

NBIA Clinical Centers are institutions that are part of our research network and participating in our International Patient Registry. They are collecting natural history studies and other information on all NBIA disorders to further research and prepare for future clinical trials.

Find Centers

NBIA Genetic Testing Labs

A listing of known NBIA genetic testing laboratories around the world.

Find Labs