In the 2012 fiscal year, 96 cents of every $1 donated to NBIA Disorders Association went directly to programs and services for NBIA individuals and their families. We are proud that our administrative and fundraising costs are very low compared with those of many charities. To learn more about the work we do, our financial history and spending, we invite you to review the IRS Form 990’s that are available here.

NBIA Disorders Association FY 2011 Expenditures were for only 9 months as it was the first year of our new fiscal year. Future fiscal years will start on 10/1 and end on 9/30 of the following year. There were no research grants awarded in FY 2011. 6 were awarded in FY 2011 - 2012 totaling $205,800 which would have been part of the 2011 expenditures if we had not changed our accounting method and all percentages would have reflected that difference.

Worldwide NBIA Alliance

In January 2012 the EU-funded NBIA project TIRCON (Treat Iron-Re-lated Childhood-Onset Neurodegeneration) started with a kick-off meeting in Munich, Germany. Existing and developing NBIA lay advocacies from Europe and the United States launched the international NBIA Alliance in combination with and supported by this TIRCON meeting.

The Alliance members’ agreements comprise the following areas of cooperation:

• While each country has their own legal entity, we share common goals in helping NBIA families coping with these rare disorders, promoting improved health care with access for all those affected and supporting NBIA research to find more effective treatments and ultimately cures for these disorders.
• We display the Alliance logo on our websites and in literature to show we are members of a worldwide collaboration.
• We encourage the growth of NBIA organizations in other countries and strive to help newly developing groups by sharing our knowledge and being a resource to help them flourish and join our Alliance.          
• We are represented by the lay leaders of each country’s NBIA organizations.
• We are willing to network and exchange experiences with other organizations that share our goals in the field of rare diseases.

The countries below are represented with member groups. We would like to expand our Alliance to other countries, so if you are interested in starting a group, please contact one of our members. We will be happy to help you with organizational questions and support in finding other NBIA families in your country. Belonging to our Alliance will empower your organization and give you strength when promoting NBIA awareness in your country.

Member Countries   (NBIAalliance.org)

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Warm regards,

- NBIA Disorders Association staff