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 June 2019, we are 10 members strong from member organizations in Canada, France, Germany, Hungary, Italy, Netherlands, Poland, Spain, Switzerland and the United States.
The NBIA Alliance is…
- an interconnector between lay advocacy and scientific networks worldwide
- an interface between different stake-holders in both the NBIA and Rare Disease community
- a educator of the rising knowledge of NBIA disorders
- a promoter of sustainable, collaborative NBIA research
- a supporter of the development of Best Practices guidelines for all NBIA Disorders
- a supporter of the International NBIA Patient Registry for all NBIA Disorders
Goals of the NBIA Alliance:
- To bring together all NBIA lay advocacy organizations around the world in a united voice of collaboration for our common goals
- A strategic plan for the future which will be implemented by all partners
- Financial and organizational support for NBIA research, thus helping to move the biomedical research towards more effective and, ultimately, curative treatments
- Promoting improved health care with early diagnosis, effective therapies, and an adequate psychosocial support with access for all those affected
- Helping NBIA families cope with these rare disorders and enabling them to network on an international level
- Distributing harmonized, validated biomedical and social information on all NBIA Disorders appropriately to different target groups
- Encouraging the growth of NBIA organizations in other countries and striving to help newly developing groups by sharing knowledge and being a resource to help them flourish and join the Alliance
- Networking and exchanging experiences with other organizations, research institutions and industry that share the Alliance’s goals in the field of rare diseases
- Identifying, encouraging and supporting new researchers interested in studying NBIA disorders
We encourage your participation in our efforts and hope you will join us in this worldwide effort. Please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it. with any suggestions, comments or ideas to help strengthen our work.
